February 2007 Edition - Access Press by Access Press

February 10, 2007

History Note

Inside

“The farther back you look, the farther forward you are likely to see.”

■ Ashley Treatment Debated—p. 3 ■ Remembering Chuck Frahm—p. 4 ■ Accessible Habitat Home—p.5

—Winston Churchill Page 2 Nonprofit Org. U.S. Postage PAID Mpls. MN Permit No. 4766

Volume 20, Number 2

Minnesota’s Disability

Community Newspaper

February 10, 2007

New UN Disability Rights Treaty 20 Nations Must Sign to Activate This New Law by Katherine Guernsey

n December 13, 2006, the United Nations General Assembly adopted the first ever UN convention to address the human rights of people with disabilities. The Convention on the Rights of Persons with Disabilities (CRPD) is the first core international human rights conven-

Arizona Split Over Minimum Wage Some want new increase to leave a loophole to pay disabled workers less by Catherine Komp

nder Arizona’s new minimum-wage law, some of the lowestpaid workers – including those who made just pennies per hour a few days ago – are to get a raise this week. But some groups don’t want the wage hike to apply to people with disabilities. Before voters passed Arizona’s new wage law, certain workers with disabilities were exempt from the minimum wage and were paid what are called “commensurate wages” instead. Under the new law, effective January 1, employers must pay even these employees the standard $6.75 hourly minimum wage.

“‘Commensurate wage’ is an Orwellian tag for a law that legalizes inequality,” said disability-rights activist and author Marta Russell. “It degrades the disabled laborer to equate his [or] her productive capacity as less than [that of] a non-disabled laborer and to not give them equal pay. Who is to say that the disabled worker’s labor is not equal to

of Labor’s Web site says alcoholism and drug addiction are also “disabilities which may affect productive capacity.” For states that have minimumwage laws, many include waivers to ensure that employers can continue to pay sub-minimum wages. Massachusetts, Pennsylvania and Colorado included such waivers in their new minimumwage increases, also going into effect this week. But Arizona failed to include an exemption in the language of its voter-approved ballot initiative last November.

“[Federal law] permits employers to pay belowminimum wages to workers whose “productive capacity is impaired by a physical or mental disability, in- Some 5,600 employers pay cluding those relating to sub-minimum wages to about Some advocates for people age or injury.” 424,000 workers across the with disabilities support commensurate wage policies, saying it boosts employment for people who employers might otherwise refuse to hire, and they are asking the state legislature to reinstate the wage exceptions. But others call the practice discriminatory, exploitative and one more way to segregate people with disabilities.

or more productive or profitable for their employers than the average couch potato’s?” The federal Fair Labor Standards Act permits employers to pay below-minimum wages to workers whose “productive capacity is impaired by a physical or mental disability, including those relating to age or injury.” The Department

country, according to a 2001 report from the US Government Accountability Office. More than half of these workers make less than $2.50 an hour. To pay a worker a commensurate wage, the Department of Labor requires an employer to analyze a job’s requirements and compare the proMin. Wage - cont. on p. 14

tion (also called a “treaty”) of the twenty-first century. As noted by then Secretary General, Kofi Annan, this was the fastest negotiated human rights convention in the history of international law, having been completed in just under five years! The CRPD will be opened for signature by UN Member States on March 30, 2007. From that point onwards, countries will be able to become States Parties to the Convention by signing and then ratifying it. Once a country becomes a States Party, it is legally obliged to comply with the provisions set forth in the convention. Twenty countries must become States Parties in order for the CRPD to “enter into force,” a term used to mean that the convention is legally activated and operational. Once the CRPD has entered into force, the committee of experts will be formed to monitor implementation of the Convention and ensure that States Parties are living up to their commitments. History of the CRPD The current process to draft the CRPD began in December of 2001. At that time Mexico sponsored a General Assembly resolution to establish an “Ad Hoc Committee” to consider proposals for a new human rights convention for people with disabilities. The Ad Hoc Committee met for a total of eight sessions at UN Headquarters in New York, with each session lasting two or three weeks each. The final meeting of the Ad Hoc Committee took place last December, when they adopted a final text for consideration by the UN General Assembly. Throughout the Ad Hoc Committee sessions, people with disabilities from around the world played a critical role,

providing unique perspectives based on their lived experiences. Over time, many government delegations came to include people with disabili-

“[The treaty also requires] that people with disabilities and their representative organizations be consulted by government in all decisions affecting their lives. This requirement of consultation is not seen as a favor, but rather a right…” ties as members of their delegations. During the phase when the first draft of the Convention was put together, people with disabilities from a variety of Disabled People’s Organizations (DPOs) participated on an equal basis with governments. Never before have members of international civil society played such an involved and integrated role in a process to draft a UN human rights convention. Although some government delegations were initially opposed to this type of participation, the DPO rallying cry

“At present the United States is undecided as to whether it will even sign the Convention, let alone become a States Party.” of “Nothing About Us Without Us” proved too strong to resist; over the course of the negotiations those same government delegations came to rely on the counsel, knowledge and leadership of the people with disabilities participating in the process. Benefits of the New Treaty What then does the CRPD offer to people with disabilities, including disabled people here in the United States? First of all, it should be noted that the CRPD is not, and cannot

be, a “magic bullet” for all the problems faced by disabled people in different countries. Nor can it provide solutions to these problems overnight. What the CRPD does offer is a powerful tool for use by people with disabilities and disability advocates. The CRPD covers the full range of human rights, and clarifies what governments must do to ensure that people with disabilities are able to fully enjoy their human rights, whoever they are and wherever they live. Moreover, the provisions of the CRPD are legally binding for governments who become States Parties. That means they must comply with their obligations, instead of just taking action when they feel like it. The CRPD also draws international attention to disability issues, helping to ensure that disabled people are no longer “invisible” within the international human rights system. With a Committee in place to monitor implementation of the CRPD, governments will be held accountable for their actions, and disability advocates will have a body to turn to when violations occur. The CRPD Committee will also serve as a resource, helping other existing human rights treaty bodies to understand how to address disability issues in their work to monitor the implementation of the other UN human rights conventions. For people with disabilities who live in countries without legislation like the ADA, the CRPD will hopefully prompt their governments to adopt such legislation, giving disabled people in those countries another tool to use in their advocacy. For people with disabilities here in the United States, the CRPD can help to promote and reinvigorate the original spirit of the Treaty - cont. on p. 14

February 10, 2007

he Ashley Treatment—and the na tionwide ethical controversy it has caused—has me confused. Ashley is a 9-yearold child from Seattle who has been given various medical treatments to keep her from maturing. The disability community is divided over the issue (see page 3). I hope we will get more of your opinions to consider on this controversial procedure.

Tim Benjamin, Editor

I have a difficult time understanding how this procedure, in keeping Ashley from developing into a full-grown, adult female, will give her a better quality of life or a more dignified life. For me it’s clearly wrong to do this procedure if it is primarily for easing the difficulties of giving care. Fifty years ago, it was easier to place a person with a disability in an institution than to care

for them at home. A 1000 years ago, medical procedures were thought to be insults to a higher power—if the higher power wanted us to live, we would not have become sick. For Ashley’s sake, I hope we will not some day look back and regard “Ashley’s Treatment” to be as backward as these approaches. I am afraid, however, that we will. In most disability issues there is no one-size-fits-all answer. There is no absolute right or wrong with regards to most disability-related medical treatments. There is no one choice that every individual would make. There are certainly few choices that we want society to make for us. But no matter where we stand on medical ethics, most of us agree there is one true imperative: every person, no matter what their IQ or physical abilities, is a human being with the

right to respect and dignity, Perhaps the new United Najust as they are. tions Convention on the Rights of Persons with Disabilities I am having a difficult time (page 1) can shed some light taking a position in this case; on the Ashley debate. One of there are too many questions the general principles of the involved. Is the important is- Convention is “respect for the sue that we should not do this evolving capacities of children kind of invasive procedure, with disabilities and respect even for the presumed im- for the right of children with provement of quality of life? disabilities to preserve their Or is the question whether we identities.” The convention should inhibit the growth of also calls for “recognizing the any person? Is the question need to promote and protect whether life is more dignified the human rights of all persons when the body size matches with disabilities, including the mental capacity of the those who require more intenbrain? Is the main question sive support,” and for “recogwhere this slippery-slope will nizing that women and girls take us? Or is it what do dig- with disabilities are often at nity and respect really mean? I greater risk, both within and think the debate needs a clearer outside the home of violence, laying out of the questions. injury or abuse, neglect or negligent treatment, maltreatment One thing is for sure, this whole or exploitation.” issue screams for the need for better personal care for vul- As the Convention notes, “Disnerable individuals and their ability is an evolving concept loving families. and results from the interac-

tion between a person’s impairment and obstacles such as physical barriers and prevailing attitudes that prevent their participation in society. The more obstacles there are the more disabled a person becomes.” If the United States ratifies the convention, the Supreme Court of the United States may have a better description of disability when determining American with Disability Act cases. The present Convention will be open for signature by all States at the United Nations Headquarters in New York beginning March 30, 2007. Hopefully the United States will sign and ratify the convention right away. It’s pretty clear that the Convention sets standards that can protect the rights of people with disabilities here and around the world—including Ashley. ■

History Note

Geri Joseph Local Journalist Exposed Deplorable Conditions in State Institutions in ’48

“What you would see in these [Excepted with permission hospitals by and large would from: “With An Eye To The be men and women either just Past: The History of Deinstistanding around doing noth- tutionalization in Minneing or you would see those sota,” at www.mncdd.org, “In one of the hospitals who were catatonic sitting in the Web site of the Minnesota “It was the kind of scene that there were just an in- corners, on the floor, sitting Governor’s Council on Dereally haunts you for long after credible number of like this, all bunched over, not velopmental Disabilities.] you have been through them,” moving, not speaking, In one said Joseph in a later interview. people who were liter- of the hospitals there were just “We very methodically went ally tied up…some of an incredible number of people through all of the institutions at them would be tied to who were literally tied up. that time. I don’t remember, beds, spread-eagle . . .” They’d have leather cuffs. Or there were seven or eight. they have almost like a basethere. There was very little ball catcher with the leather “Those hospitals were in very, treatment of any kind. If you things in the front and the hands very bad shape. You would got a physical exam once a hooked to it, or some of them not have called them hospi- year, that was a miracle. would be tied to beds, spreadeagle tied to beds. They had no sheets or pillowcases on these beds. And the ticking, you know, the mattress ticking, in many places was very dirty. Co-Founder/Publisher (1990-1996) .................................................. Wm. A. Smith, Jr. Well, it is very hard to deCo-Founder/Publisher/Editor-in-Chief (1990-2001) ....................... Charles F. Smith scribe it adequately.” ■ Board of Directors .............. Brigid Alseth, JoAnn Cardenas Enos, Mike Chevrette, Kelly Matter, Anita Schermer, Tom Squire & Kay Willshire Editor ......................................................................................................... Tim Benjamin Assistant Editor .............................................................................................. Bret Hesla Cartoonist ..................................................................................................... Scott Adams Production ...................................................... Ellen Houghton at Presentation Images Sales/Marketing ...................................................................................... Lance Hegland National Housing Institute, Distribution ......................................................................................... S. C. Distribution

ixty years ago, Minnesota journalist Geri Joseph played an important role in advancing the rights of people with disabilities in the state. In 1948, she authored an extensive newspaper exposé in the Minneapolis Morning Journal detailed the living conditions in Minnesota’s 15 state mental institutions and brought the issue to public attention. Joseph, know then as Geri Hoffner, published a 10-part report on the deplorable conditions in the state’s mental institutions. Remarkably, the

report, which was critical of the current system at the time, was created with Governor Luther Youngdahl’s full support and approval.

tals. People have described them as warehouses. That’s really what they were. You just sort of stockpile people in

Geri Joseph

Access Press

ACCESS IS FREEDOM!

Access Press is a monthly tabloid newspaper published for persons with disabilities by Access Press, Ltd. Circulation is 11,000, distributed the 10th of each month through more than 200 locations statewide. Approximately 650 copies are mailed directly to political, business, institutional and civic leaders. Subscriptions are available for $25/yr. Editorial submissions and news releases on topics of interest to persons with disabilities, or persons serving those with disabilities, are welcomed. We reserve the right to edit all submissions. Editorial material does not necessarily reflect the view of the editor/publisher of Access Press. Paid advertising is available at rates ranging from $16 to $20.70/column inch, depending on size and frequency of run. Classified ads are $10, plus 45¢ per word over 12 words. Advertising and editorial deadlines are the last day of the month preceding publication, except for employment ads which are due by the 25th. Inquiries should be directed to: Access Press • 1821 University Ave. W. • Suite 104S St. Paul, Minnesota 55104 • 651-644-2133 • Fax 651-644-2136 E-mail: access@accesspress.org • Web site: www.accesspress.org

Inc.

Affordable/Accessible Housing For Persons With Mobility Impairments

We have immediate openings at our St. Paul Property. Call TODAY!

WWW.NHHIACCESSIBLEHOUSING.COM Community Enrichment Through Housing Diversity

CALL 651-639-9799

February 10, 2007

For Their Own Good? Advocates Decry “Ashley” Treatment by Dave Reynolds

his week, more disability rights advocates weighed in on a controversial set of procedures that a Seattle couple ordered for their daughter, who has physical and intellectual disabilities, in an effort to keep her “child size.” The “growth attenuation” treatment, which the anonymous parents called the “Ashley Treatment” on their weblog, involved using massive dosages of the hormone estrogen to stunt the growth of the now 9-year-old girl, along with surgery to remove her uterus and her breast tissue to keep her from starting puberty. The procedures took place over a two-and-a-half year period at Children’s Hospital and Regional Medical Center in Seattle, and were overseen by a medical ethics panel through the University of Washington. The treatment was revealed last October in the journal Archives of Pediatrics and Adolescent Medicine, but did not receive much attention until the parents published their own

Web site, on January 2, to defend the treatment and to promote the procedure for parents of other “Pillow Children” —those with severe disabilities. Many disability groups and individual advocates have issued public statements expressing outrage, disgust and fear over the parents’ treatment of Ashley, the medical ethics board’s refusal to stop the treat-

“‘Benevolence’ and ‘good intentions’ have often had disastrous consequences for the disability community.”

fact that Ashley’s parents said they worried they would not be able to care for her at home if she grew up. On Thursday, January 11th, a group of about 25 activists, many in wheelchairs, gathered at the national headquarters of the American Medical Association in Chicago. The activists, organized by the Feminist Response in Disability Activism, and including members of the grassroots disability rights groups ADAPT and Not Dead Yet, were there to demand that the physicians association condemn the practice. They also called for the AMA to support federal legislation that would increase funding for community-based services.

ment, and the public’s general acceptance of the idea of that altering the size of a child would be good for the child, Here are excerpts from some the family and society at large. of the statements by disability groups: Some have called for federal and state investigations to de- “This is an issue of basically termine whether the treatment subjecting a child to drastic physical alterations to fit the was ethical and legal. convenience of her care-givMost also called for increased ers,” said Stephen Drake of funding for community-based Not Dead Yet. and in-home supports for people with disabilities and In a brief press statement, Self their families, in light of the Ashley - cont. on p. 9

Accessible Space, Inc. ASI

HOUSING WITH CARE

Accessible, affordable housing & supportive living options for adults with qualifying disabilities or seniors 62 & older ACCESSIBLE, AFFORDABLE HOUSING

SUPPORTIVE LIVING SERVICES*

• Rent based on 30% of monthly income • A variety of supportive services are • Wheelchair accessible, 1 & 2 BR apts. available for adults with a physical • 1 BR apts. for seniors age 62 and older disability, mobility impairment, • Approved pets welcome! or traumatic brain injury, including • Locations throughout the Metro Area, 24-hour shared personal care Greater MN, and throughout the Nation attendant staff at many locations.

GREATER MINNESOTA LOCATIONS Austin • Brainerd • Champlin • Duluth • Grand Rapids • Hibbing Marshall • Rogers • Rochester • St. Cloud • Stillwater • Willmar

(651) 645-7271 or (800) 466-7722 ~ TTY/TDD (800) 627-3529 Housing Info: ext. 295 ~ Employment Info: ext. 297 (EOE/AA) Apply for housing or employment on-line: www.accessiblespace.org

Commentary

Ashley Parents Not Wrong Treatment Looks Different When Considering a Life of Relentless Medical Interventions by Jodie Johns

s a mother of a child with a severe disability, I thought others might be interested in my thoughts on the Ashley Treatment.

for this type of care...although they try. The complex care needed by a large-body person, whether in a nursing home, foster care or group home, is more risky than that required for someone who is small.

They merely want others to know that there are options for a child with severe disabilities. I agree with the doctor from one of the ethics boards, who stated that this is a sad case because while our society needs to be able to take care of people like this little girl when she grows up, such care is not

Public” strongly oppose these procedures, they do and physically similar children not realize the relentlessness endure throughout their childof life for the child—or the hood:

know my son, who is very much like this child physically. Here is a list of some of the medical interventions my child

“I consider myself very fortunate because I can First, I am sad about the critipay a fair wage for this cisms the parents have received. Second, while most of “Joe difficult work.”

“My saddest day will be • 8 dental surgeries (a simple the day I cannot lift [my annual teeth cleaning requires anesthesia and a hospital fason] in my arms.”

caregiver. When you talk about breast and uterine removal and “. . . while our society stunting someone’s growth, needs to be able to take these may seem like horrifycare of people like this ing and violent medical procedures. Surgery, as you and I little girl when she grows both know, is terribly up, such care is not what risky under the best circumour society deems impor- stances. However, when you consider what this child has tant.” already been through... I wonwhat our society deems impor- der are these procedures really tant. There is not enough fund- wrong? ing for this level of care. The AARP is not big enough I don’t know Ashley, but I

cility) • 1 g-tube placement • 11 botox and phenol injection surgeries (every 6-12 months for flexibility and contractures) • 3 eye surgeries • 600 hours of physical therapy • 600 hours of occupational therapy • 672 hours of speech therapy • $5000 for an Augmentative Communication Device • 4 wheelchairs, each requiring eight hours of adjusting Parent view - cont. on p. 13

Diamond Hill Townhomes We are currently accepting applications for our waiting list at Diamond Hill Townhomes, a great property located near the Minneapolis International Airport. We have two and three bedroom townhomes that are HUD subsidized and rent is 30% of the total household's adjusted gross income. We have a large number of mobility impaired accessible units and we are scheduling appointments for persons in need of a mobility impaired accessible unit immediately. To schedule an appointment please call (612) 726-9341.

*Eligibility or selection of ASI services is not required to qualify for housing ASI services are not available in all locations

BDC Management Co. is now accepting applications for our waiting lists at the following affordable communities Albright Townhomes Buffalo Court Apartments Elliot Park Apartments Evergreen Apartments Franklin Lane Apartments Hanover Townhomes Lincoln Place Apartments Olson Towne Homes Prairie Meadows Raspberry Ridge Talmage Green Trinity Apartments Unity Place Vadnais Highlands Willow Apartments Woodland Court Apartments

Minneapolis Buffalo Minneapolis Hutchinson Anoka St. Paul Mahtomedi Minneapolis Eden Prairie Hopkins Minneapolis Minneapolis Brooklyn Center Vadnais Heights Little Falls Park Rapids

(612) 824-6665 (763) 684-1907 (612) 338-3106 1-800-661-2501 (763) 427-7650 (651) 292-8497 (651) 653-0640 (612) 377-9015 (952) 941-5544 (952) 933-3260 (612) 623-0247 (612) 721-2252 (763) 560-7563 (651) 653-0640 (320) 632-0980 1-888-332-9312

1 BR 2 BR 2 BR 1 BR 1 & 2 BR 1 BR 2 BR 1 BR 2 & 3 BR 2 BR 2 BR 1 BR (sr) 2 BR 3 BR 1 & 2 BR 1 BR

(Please call each individual site for specific building information. All listings are accessible.)

February 10, 2007

Let Us Now Praise Great Men

Faith Lost And Found

Remembering Local Disability-Rights Pioneer Chuck Frahm by Mel Duncan

avid Korten, in his book The Great Turn ing, urges us to change the stories we live by. Chuck Frahm, who died in November, provides one of these stories that we need to proclaim and honor.

ents for transportation and most everything else. They had started coming to the cerebral palsy center for an accounting class. We spent a lot of time talking together. The group shared their dreams and aspirations. They wanted independence, jobs, transportation, entertainment, housing, friends, sex and fun. They told of other people with disabilities whom they had met, usually at charitable functions or when they were in school.

I met Chuck Frahm in 1972 at the St. Paul United Cerebral Palsy Center at the dawning of the disability rights movement in Minnesota. He was a couple of years older than I. He was a skinny guy with penetrating, After a lot of listening and a little trust, they started talking “Chuck and the others about their anger and frustralearned that they were tion. The group invited other not alone in their people with disabilities to meetings just to talk. Soon all struggles. Individuals were sharing their stories, quit blaming themselves. dreams and frustrations. OfThey quit accepting. They ten there would be knowing nods and comments like “You started organizing.” too!” An amazing thing hapbrown eyes and Huck Finn pened. Chuck and the others hair. He walked with braced learned that they were not alone crutches and covered about ten in their struggles. Individuals feet a minute, often falling and quit blaming themselves. They banging his head and shoul- quit accepting. They started ders. He refused to ride in a organizing. wheelchair. He talked by shakily pointing to letters on a tat- The group decided to register tered green board. He talked people with disabilities to vote even slower than he walked, in the 1972 election. At that and he drooled often. time few polling places were accessible. Absentee registraHe and some friends had tion and voting required notagraduated from high school rization, so two of the group and then spent the next three members became notary pubyears sitting alone at their lics. They advertised their serhomes. Now in their early vice in the newspaper. Small twenties, they were almost to- teams including one of the tally dependent on aging par- notaries went to nursing homes

and other large residential facilities that housed people with disabilities. They registered people to vote and then returned with absentee ballots. The group scheduled candidate nights and questioned politicians about architectural barriers, accessible transportation and jobs.

Agent Orange and the Transformation of a Soldier with Disabilities by Clarence Schadegg

ietnam veteran John Fields died on January 15, 2007. Two days later, at his funeral in St. Paul, Rabbi Avrom Ettedgui chanted one of John’s favorite psalms, Psalm 23.

“The LORD is my shepherd; I shall not want. He maketh me to lie down in green pastures: he leadeth me beside the still After the election, the group waters.” began talking about problems that they had encountered dur- It seems fitting that John died ing their voter registration and on the same day we commemoeducation campaign. Chuck rated the life of Dr. Martin and the others now clearly saw Luther King. John may not issues as more than personal. have delivered great speeches They identified barriers in their lives. They discussed how “…John used to say he these barriers not only im- “went to Vietnam believpacted them but also the hun- ing in G-d, country and dreds of people they had registhe American way and tered to vote.

came home a year later They started to list what they believing in none of wanted changed. They wanted them.” voter registration and absentee balloting by mail with no notary requirements. They wanted personalized rubber stamps to serve as official signatures for those unable to write. As people talked they became emboldened. They wanted accessible transportation and full human rights.

and he did not stand before hundreds of thousands of people to give an “I Have A Dream” speech, but John did have a dream. And he did connect with many of us with the same spiritual centeredness Dr. King had. John’s strength was his devotion to God and his family. His children called him their hero. Those of us who were honored to take part in his funeral and burial felt the same way.

Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort Me.”

the neglect of the VA. If the public really knew how our veterans are treated after they return from war, no one would ever enlist.”

John joined the Marines in the 1960s; he served in Vietnam in ’65-‘66. He put his life on the line for his fellow Americans, and when he returned, he deserved better treatment from us than he got. Like many other soldiers who joined the military during the Vietnam war, John went overseas to serve God and country. And it was God that kept him going, in part, as his country let him down.

“Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over.

According to Cheryl Fields, John’s widow, John used to say he “went to Vietnam believing in G-d, country and the American way and came home a year later believing in none of them.” It would take a long time to realize G-d and country may not necessarily be the same thing. John survived the war but it would take him a long time to learn to live at peace with himself and G-d. While he formalized his commitment to Judaism only last year, he has been following Jewish traditions and beliefs for more than 20 years... you see, the last time he joined something, i.e., the Marines, it wasn’t so good. This time he wanted to be sure.

Chuck and his friends invited newly elected legislators to the UCP Center, not for a charity tour but to present their demands. They began developing legislation, doing research “He restoreth my soul: he John died of cancer and other and finding legislative authors. leadeth me in the paths of righ- complications related to his teousness for his name’s sake. exposure to Agent Orange Frahm - cont. on p. 15 during the Vietnam War; and he wrestled with the Veterans Administration about how this agency should accept responsibility to support service per-

John Fields helped start veterans rap groups, Alcoholic Anonymous chapters and speaker’s bureaus. John was, above everything else, a devoted father to his three children and to his wife Cheryl. His son Jesse says, “Even in death, he continues to bring people together,” noting the diversity of people at his father’s funeral , all paying their respects to a Jewish man. Surely goodness and mercy shall “pursue” me all the days of my life: and I will dwell in the house of the LORD for ever.” The custom at a Jewish burial is for each of us to take the shovel and spread a shovel full of dirt over the grave as one by one we fill the final place of rest with the good earth. Rabbi Ettedgui told us to pause before we release the soil from the bowl of the shovel as a symbol we wish the deceased was still with us. This process was repeated three times for each person who stepped forward to make a final goodbye. The shovel is then laid down with the bowl turned downward for the next person to go through this ritual of respect.

“His children called him John, we wish you were still with us. I will miss our debates their hero.”

A picture is worth…

Full service remodeling and space modifications for the entire home. Specializing in modifications for the disability and aging-in-place communities.

651-454-5899 www.axisremodeling.com

sonnel whose lives were put at risk from such a deadly chemical like that of Agent Orange. John told me in one of our previous conversations of how he put himself into a back-toback treatment in 1979, and that he felt worse after the sixty days of treatment rather then better. He wasn’t allowed, during these therapy sessions, to talk about the battlefield experiences that led to his mental and physical disabilities.

over the books and verses of the Torah. We had different world views: yours was one of the sighted and mine was one of the blind. You, the carpenter, carved wood as you made old things new from cedar and oak. And I, with my keyboard, made new stories from old lines, as I do now with my memories of you. John Fields,1945—2007, died far too early at the young age of 61. John was survived by his wife Cheryl, his children Jessie, Sunny and Jennifer and his son-in-law Mike. Our eyes watered and our hearts wept as we heard Larry Long’s songs of tribute woven between Rabbi Ettedgui’s chanting and reading in Hebrew and English.

His struggle to educate the Veterans Administration about better therapy for disabled veterans—as well as better support through the maze of bureaucratic twists and turns prior to and during his treatment for cancer—seemed to have been met with neglect. As Cheryl bitterly noted, “John isn’t the Shalom and peace to you, my only veteran who suffered the friend. ■ effects of Agent Orange and

February 10, 2007

Grab Your Hammers

FAQ@DLL

Habitat for Humanity Seeks Applicants for ADA-Compliant House in Plymouth

Keeping Your MA Coverage and Your Job

by Sharon Rolenc

by the Disability Linkage Line Staff

ffordable homeownership opportunities for Twin Cities area residents with disabilities are about to expand. Twin Cities Habitat for Humanity (TCHFH) recently announced construction plans for an accessible, ADA-compliant home in Plymouth. Nationwide, only 7 percent of people with a disability are homeowners. “It’s difficult for many families in the disability community to find decent, affordable housing,” said Susan Haigh, president of Twin Cities Habitat for Humanity. “We are thrilled to offer the disability community access to decent, affordable homeownership opportunities.”

Volunteers working in the cold to frame in a new house. Homeowner families are selected based on need and put in 300500 hours of "sweat equity" helping to build Habitat homes. applicant is selected, an assessment will be done to address their specific required needs so that the home is designed to fully meet ADA compliance.

munity, TCHFH is exploring the option of building more ADA-compliant homes over the next couple of years in the metro area.

Ground breaking on the PlyIf there is enough interest gen- mouth home is planned for this The next step is selecting a erated from the disability com- spring. ■ homeowner from a pool of eligible applicants. Families who About Twin Cities Habitat for Humanity purchase Habitat homes are selected based on need, ability The mission of Twin Cities Habitat for Humanity is to elimito repay the zero percent mort- nate poverty housing from the Twin Cities and to make gage, and willingness to decent, affordable shelter for all people a matter of conpartner. Interested applicants science. Volunteer labor, donated materials and contributed are required to attend a funds are used to build and renovate homes in the Twin Cities homeownership orientation area. Working under the faith-based principle that no profit should be gained from assisting those in need, Habitat for “Interested applicants Humanity charges no interest on the mortgages that it issues are required to attend a to homebuyers. Homeowner families put in 300-500 hours of homeownership orien- “sweat equity” helping to build Habitat homes. Since 1985, TCHFH has built 649 homes in the seven-county metro area tation session on and engages more than 20,000 volunteers a year. For more Thursday, March 1 …” information, visit www.tchabitat. org. session on Thursday, March 1, from 6:30-8:30 p.m. at the Twin Cities Habitat for Humanity office, 3001 4th Street SE in Minneapolis. The office is wheelchair accessible. For more information or to register for the orientation, call TCHFH Family Services at 612-331-4090. According to TCHFH’s construction department, once an

Computerized Desktop publishing: Advertiments Brochures Catalogs Flyers Newsletters Newspapers Project Mgmt Scanning ... & more! Ellen Houghton 952-404-9981 presentationimages@mn.rr.com

Q: Can I keep my MA health sistance (MA). There is no upcare coverage if I get a good per income limit for MA-EPD. paying job? People can earn as much money as they want, or can, and stay on A: Health care is a topic ev- the program. This no-limit feaeryone seems to be talking ture is meant to encourage about these days. We see it on people to work to their full poTV, read about it in the news- tential without the fear of losing paper, and hear about it on the their health-care benefits. radio. It’s also a frequently asked question at the Disabil- To be eligible for MA-EPD ity Linkage Line (DLL). you must: • be a resident of MN between With the dizzying array of the ages of 16 and 64 health-care options, finding • certified disabled by the Soand keeping adequate health- cial Security Administration care coverage can be challeng- (SSA) or the State Medical ing. Often, people with dis- Review Team (SMRT) abilities face additional chal- • employed and paying Social lenges, like not having access Security and Medicare taxes to employer-based insurance, • earning more than $65 each pre-existing condition exclu- month sions, or policies with inad- • have assets of less than equate coverage to meet their $20,000 (some assets are not medical needs. counted, including your home, one car and retirement The Medical Assistance for accounts) Employed Persons with Disabilities (MA-EPD) program Even if you have been denied may offer a solution. MA-EPD disability by the SSA solely is a work incentive that allows because of your earnings, you Minnesotans with disabilities to may still be determined diswork and keep their healthcare abled by the SMRT and elicoverage through Medical As- gible for MA-EPD.

For those who do have private, group or employer-based insurance but need additional coverage, you can keep that insurance and get MA-EPD. Many services that are not covered by commercial policies may be paid for by MA-EPD, such as mental- health services, personal assistance and medical supplies and equipment. MA-EPD has a monthly premium based on a sliding feescale or a minimum of $35, whichever is greater. Applications are available at most medical clinics and at any local county human service agency. It is important to have the facts before making a decision about what health-care coverage is right for you and your family. ■ For more information about MA-EPD, visit www.dhs. state.mn.us/maepd or call the Disability Linkage Line at 1866-333-2466. DLL provides free, disability-related information and assistance for Minnesotans.

1.866.333.2466 Minnesota’s connection to disability-related information and assistance Housing Personal care assistance Transportation Employment Disability beneﬁts Assistive technology and much more! Call today for a free info kit.

February 10, 2007

News At A Glance . . . U of M Adapted Sports Club Recruits Members

MDA Seeks Volunteers for 2007 Summer Camp

ast month, about 200 people attended a wheelchair basketball exhibition game, featuring the Courage Center’s athletes, at the University of Minnesota’s Rec Center. The event was staged to raise awareness and recruit members for the University’s newly formed Adapted Sports Club, and also to generate support for an official University of Minnesota wheelchair basketball team.

he Muscular Dystrophy Association is searching for camp volunteers who are looking for a rewarding and memorable experience. Volunteers are needed to help individuals with neuromuscular diseases enjoy a fun-filled MDA camp, June 2nd - 8th at Camp Courage, Maple Lake, MN. Volunteers must be at least 16 and able to lift and care for a camper between 6 and 21.

Courage Center athletes play an exhibition game to promote the U of M’s Adapted Sports Club.

The Junior and Adult Rolling Timberwolves and the Rolling Gophers provided the game entertainment for the large crowd that ringed the Rec Center court. At halftime, spectators and U of M dignitaries tried their hand at shooting free throws. The Adapted Sports Club was formed last spring, becoming the University of Minnesota’s first recreation club designed for students, faculty and staff with disabilities.

New Resources Available for Children’s Mental Health

Counselors assist campers with all aspects of camp activities. “MDA camp is the event that our kids think about year-round,” said MDA Chapter President R. J Banse. “One week of the year, they are in an environment where having a neuromuscular disease is the norm, not the exception.” For an application or for questions, call the local MDA office at 952-841-0533. [Source: Muscular Dystrophy Association]

he Minnesota Association for Children’s Mental Health has the following new and updated publications available.

The U of M has more than 1,200 registered students with disabilities, but most do not participate in sports or have their • A Guide to Early Childhood Mental Health (new). This guide examines the common, everyday concerns that recreational needs met at other places in the community, caregivers address (such as aggressive behavior, eating and because they are not aware of the opportunities on campus. The temper tantrums) and provides detailed information about Adapted Sports Club is meant to act as a liaison between how to respond to different behaviors. students and staff with disabilities and the Department of Recreational Sports, said Tony Brown, the department’s asso- • An Educator’s Guide to Children’s Mental Health (revised). Previously titled “A Teacher’s Guide to Children’s Mental ciate director. Health,” this book equips educators with the tools needed to reach all students. The Adapted Sports Club is scheduling another wheelchair basketball exhibition during the halftime of the Gopher women’s • SuperMe: A Campaign To End Hurtful Teasing (revised). Meet SuperMe’s friends - The Super Me Team! SuperMe basketball game on Sunday, Feb. 11. [Source: Bob San, has joined forces with Brilliant Bystander, Sonic Stop-It and University News Service, U of M] Beacon to combat hurtful teasing and bullying in the classroom.

Minneapolis Accepts Applications for 45 New Taxicab Licenses

he City of Minneapolis will be issuing up to 45 new taxicab vehicle licenses in the next few months. Applicants must submit a completed application and a typewritten business plan proposal that will establish whether the applicant is fit, willing, and able to meet the regulatory and service requirements of the Minneapolis taxicab ordinance. Pertinent to recent issues, that ordinance specifically states that drivers must accept service dogs. The applications and business plans will be reviewed by a neutral panel, including one representative from the Mayor’s Committee on People with Disabilities.

Both existing and new taxicab service companies may apply. The deadline to submit an application is 3:30 p.m. Feb. 16, 2007. For more information on these and other publications, visit FFI: Grant Wilson, Manager of Licenses and Consumer Serwww.macmh.org. [Source: Minnesota Association for vices at 612-673-3902. [Source: City of Minneapolis] Children’s Mental Health]

Introducing

REHABILITATION MEDICINE ASSOCIATES AT COURAGE CENTER Jackie Kawiecki, MD • Patricia Stewart, DO • Bonnie Warhol, MD A team of experienced physical medicine and rehabilitation physicians trained to treat people with: • Spinal cord injury • Acquired brain injury • Stroke • Congenital disabilities • Health concerns that are barriers to health and independence Patient services include: • Patient evaluations and management of rehab issues • Neuro and musculoskeletal rehabilitation • Comprehensive spasticity evaluation and management including: therapy, oral medication, splinting, injections with Botox and Phenol, and intrathecal Baclofen pump management reﬁlls Rehabilitation Medicine Associates is conveniently located at Courage Center in Golden Valley. We are seeing patients now.

Rehabilitation Medicine Associates 3915 Golden Valley Road, Minneapolis, MN 55422

To make an appointment, call 763.520.0453 courage.org

Jackie Kawiecki, MD, Bonnie Warhol, MD, Patricia Stewart, DO

February 10, 2007

Upcoming Events To list an event, e-mail access@accesspress.org Consumer Support Grant Info Sessions Feb thru Apr If you are disabled and want more control, flexibility and responsibility for your care, these free sessions explain the Consumer Support Grant, answering questions such as “How do I receive funding through this grant?” “What types of services may I buy?” and “What is my responsibility?” Feb. 12, 12:30 to 2:30 p.m., Ridgedale Library, Minnetonka (952-847-8800). March 6, 1 to 3 p.m., Rockford Road Library, Crystal (952-847-5875). March 12, 6:30 to 8 p.m., Bryant Square Park, Minneapolis (612-370-4907). April 10, 10:30 a.m. to 12:30 p.m., Edina Library (952-8475425). April 23, 6:30 to 8 p.m., Bryant Square Park, Minneapolis (612-370-4907). To register: 612-596-6631, www.hennepin.us (type “adsinfo” in the search box, click on the link and follow directions).

What Is A Waiver? Feb. 13 Listen to a group of panelists as they discuss the benefits of using one of Minnesota’s “waiver” programs, which assist people who are disabled or elderly to manage their care plan and hire, train and supervise their own staff. The panel will talk about the number of waiver programs available, what has worked well for them and what they would do differently. Details: 6:00—8:00 p.m., Maple Grove Library, 8351 Elm Creek Blvd. N., Maple Grove. Dir: 952-8475550. Registration: 612-596663, www.hennepin.us (type “adsinfo” in the search box).

lenges. Families pay no fees for this program. Details: 6:30 p.m. to 8:30 p.m. LSS office, 2414 Park Ave, Mpls. FFI, registration: 612-879-5230, www.minnesotaadoption.org.

Collective Problem Solving Educator’s Workshop Feb. 15 MN Association for Children’s Mental Health presents Dr. Ross Greene. Come and learn exciting strategies and techniques to help students who have social, emotional and behavioral difficulties develop the specific skills they are missing. Details: 9 a.m. – 4 p.m. Prom Center, 484 Inwood Ave., Oakdale, MN. FFI, accommodation req: 651-644Special Needs Adoption Info 7333, 800-528-4511, www. Feb. 13 macmh.org, info@macmh. In Minnesota, 600 children are org, TTY-1-800-627-3529. waiting for an adoptive family. Lutheran Social Service is holding an information meetNAMI’s 5th Annual ing about special needs adopResearch Dinner tion, which focuses on older Feb. 20 children who are under state Leading researchers will guardianship due to abuse or present their latest findings neglect, and need loving fami- on anxiety disorders, MICD, lies. These children are usu- treatment of psychosis, borally six years or older, and derline personality disorder, may have emotional, behav- mental illness in children and ioral, physical or mental chal- adolescents, and more. Seat-

Japanese Drumming ing 5:30 p.m. Dinner 6:00 p.m. Tickets are $35. Deadline for Feb. 26 reservations is February 15, “Arts Access at Hennepin 2007. FFI: 1-888-473-0237, County Library,” a perfor651-645-2948. mance series designed to connect teens and adults of all mental and physical abilities Changing Attitudes: 1962-2007 to the arts, presents Mu Performing Arts. The thunderous Feb. 22 Have Minnesotans changed sounds of immense taiko their opinions and attitudes drums protected harvests from about people with develop- pests and evil spirits in ancient mental disabilities during the Japan. The award-winning past 45 years? The Governor’s Asian-American theater comCouncil on Developmental pany, under the artistic direcDisabilities invites you to a tion of Rick Shiomi, commupresentation comparing survey nicates the traditions and hisresults from 1962 and today. tory of Asian cultures in stunSelf-advocates and represen- ning, high volume and highlytatives of The Arc of Minne- acclaimed percussion perforsota, United Cerebral Palsy of mances. Details: Admission is Minnesota, and The Autism free. 7 p.m. at Ridgedale LiSociety of Minnesota will re- brary, 12601 Ridgedale Dr., spond to the report. Details: Minnetonka, 952-847-8800. 1:00 — 3:00 p.m. Continuing Education and Conference Center, Room 135, U of M, St Mike’s Big Brain Bash 3.0 March 3 Paul Campus, 1890 Buford Avenue. Sign interpreter avail- Author and brain injury surviable. Other accommodations vor Mike Strand is hosting a on request. Reservations a charity event called “Mike’s must! RSVP: 651-452-9800, Big Brain Bash 3.0” to sup877-832-4548, sherie@ port the Brain Injury Association of Minnesota. This is its wallacegroup.com. third year, and the event will again have a silent auction and St. Croix Valley favorite, “Voice of Reason” playing

their mix of covers and classic rock. Details: Silent Auction starts 7:00 p.m. Music at 8:30 p.m. Withrow Ballroom. Directions: withrowballroom.com, 651439-5123. $12 at the door, $10 in advance from the Daily Grind in Stillwater (651-430-3207).

Disabled Veterans Turkey Hunt April 24-26 The St. Cloud Veterans Affairs Medical Center, Minnesota DNR and Minnesota National Guard, Camp Ripley, will conduct the Third Annual Physically Disabled Veterans Turkey Hunt at Camp Ripley in Little Falls. This special hunt is provided for physically disabled veterans who are currently receiving outpatient treatment at a VA Medical Center, or physically disabled veterans who are eligible for care and cannot hunt during the regular firearms season. Limited space is available. To receive an application, call Dennis Erie at 320-252-1670 x6394. Completed application must be returned by February 20. ■

February 10, 2007

Suzyâ&#x20AC;&#x2122;s Mug Shot Thoughts on the â&#x20AC;&#x153;Admission Photoâ&#x20AC;? Taken When My Sister Was Placed in a State Institution by Sherry Gray

n the spring of 2004 I was startled to find my sisterâ&#x20AC;&#x2122;s mug shot. Forgetting I was in a room full of people, I blurted out loud â&#x20AC;&#x153;Oh, my god!â&#x20AC;? The man working the desk at the Indiana State Archives frowned and asked me if something was the matter. â&#x20AC;&#x153;My sisterâ&#x20AC;&#x2122;s mug shot,â&#x20AC;? I answered. He looked at the large black and white photo stapled into the brown board cover of the file. â&#x20AC;&#x153;Oh, no, that was her admission photo to Muscatatuck, not a mug shot.â&#x20AC;? â&#x20AC;&#x153;Suzyâ&#x20AC;&#x2122;s Mug Shot,â&#x20AC;? discovered by the author on a visit to the Indiana State Archives. A staff member explained that it It looked like a mug shot to me. â&#x20AC;&#x153;was [Suzyâ&#x20AC;&#x2122;s] admission photo to Muscatatuck [State HospiSuzy was photographed, poked, tal], not a mug shot.â&#x20AC;? [Photo credit: Indiana State Archives, prodded, and all her details reIndiana Commission on Public Records]

â&#x20AC;&#x153;40 years ago she was admitted to Indianaâ&#x20AC;&#x2122;s Muscatatuck State Hospital, â&#x20AC;Śa place that our parents, their doctors, and state experts recommended so she would be kept away from society for â&#x20AC;&#x2DC;everyoneâ&#x20AC;&#x2122;s best interest.â&#x20AC;&#x2122;â&#x20AC;?

Muscatatuck State Hospital, a place sheâ&#x20AC;&#x2122;d never asked to go; a place that our parents, their doctors, and state experts recommended so she would be kept away from society for â&#x20AC;&#x153;everyoneâ&#x20AC;&#x2122;s best interest.â&#x20AC;?

with strangers and was cared for by a revolving staff of attendants hired and paid by the state. She had no privacy and only temporary possession of any personal things. If she wanted more cake, she had to steal from her neighbor in the dining room. If she wanted attention, she found it more useful to throw something than be nice, as nice girls were ignored.

In this place she was watched over constantly, only ate at fixed times, and was taken to and from activities and examinations without warning, and corded as more than 40 years ago certainly no choice in the mat- Suzy rarely got out of her institushe was admitted to Indianaâ&#x20AC;&#x2122;s ter. She slept in a large room tion to see the outside world.

No Payments! Even Ben thinks thatâ&#x20AC;&#x2122;s Wise! Your choiceâ&#x20AC;Ś Earn AND Save a PILE OF FRANKLINS with: 6 Months Mortgage Free or Zero Down or 2/1 Buy Down Financing* at Main Street Village Condominiums in New Brighton. Other First time home buyer programs available with Zero Down! 1 Bedroom, 2 Bedroom and 2 Story w/Private Entry Available Now. Take advantage of these special offers now and own a special condominium home, in the desirable neighborhood of New Brighton.

AMENITIES & UPGRADES: Itâ&#x20AC;&#x2122;s All Here, What You See is What You Getâ&#x20AC;Ś

___ VM_JZQOP\WVKWVLW[ KWU *Available on select 2 story, private entry condominiums at Main Street Village in New Brighton. Subject to special terms and conditions. Final terms and financing contingent upon individual buyerâ&#x20AC;&#x2122;s options and qualifications. Subject to change without notice.

Make the healthy, wealthy and wise decision.

There were locks on doors and wire covering the windows. No one imagined then that Suzy should have contact with anyone outside, even with her family. This was incarceration in what the writer and activist Harriet McBryde Johnson calls the â&#x20AC;&#x153;disability gulag.â&#x20AC;? The mug shot reminded me that because my sister was labeled mentally retarded, she was taken away and shut up in Muscatatuck State Hospital, a place that had Suzy Gray (r) and her sister, Sherry, enjoying the 2006 more characteristics in comMN State Fair. mon with a prison than a home. those early days and nights she black hair is cut short, the bangs According to the Indiana Com- must have endured alone in a a bit uneven, but neatly brushed. mission on Public records Web strange and unloving place, like She is wearing a short-sleeved site, the facility, formerly a puppy grabbed from the litter top or dress with a big round Muscatatuck State School and and given to a new family. Did collar and two rows of buttons Indiana Farm Colony for she cry herself to sleep the first Feeble Minded Youth, was nights? Was she frightened and â&#x20AC;&#x153;But when she refuses founded in 1920. â&#x20AC;&#x153;Initially, the lonely? Did she awake sobbing to say goodbye to anyIndiana Farm Colony, a work calling for her mother or her farm and residential facility, last caregiver? Or did she have one leaving her or when accepted only developmen- nightmares of being aban- she howls with glee on doned? outings around town,

â&#x20AC;&#x153;â&#x20AC;Śbecause my sister was labeled mentally retarded, she was taken away and shut up in â&#x20AC;Śa place that had more characteristics in common with a prison than a home.â&#x20AC;? tally disabled men over the age of sixteen. In 1925, with the transfer of the Colonyâ&#x20AC;&#x2122;s administrative authority to the School for Feebleminded Youth at Fort Wayne, the Epileptic Village focused less on work and more on education. In 1941, the Colony became the Muscatatuck State School and began to accept women.â&#x20AC;? Today, Muscatatuck is a homeland security training facility managed by the Indiana National Guard.

Ironically, her mug shot is the best photo taken of Suzy as a child. It is also a rare one as our family took few pictures of her. The mug shot shows Suzy seated in a wooden wheelchair with a signboard placed in front of her. It says â&#x20AC;&#x153;Gray Suzy â&#x20AC;&#x2122;70.â&#x20AC;? Suzy is not looking at the camera, but away to her left, perhaps looking at someone in the room she knows. Her shiny

then I remember that 40 years of incarceration have left their mark. â&#x20AC;? can be seen starting down the front. Behind her the dark shadow thrown onto a tiled wall shows that the photographerâ&#x20AC;&#x2122;s lights were bright and the room bare. The look in her big dark eyes is uncertain or worried. She is smiling slightly, but tentatively. Mug Shots - cont. on p. 10

Every time I look at Suzyâ&#x20AC;&#x2122;s mug shot, I want to cry. Cry Suzy Gray with her housemates Terry Casey and Laura because my sister looks so deQuist-Knox enjoying a 2006 visit to â&#x20AC;&#x153;Terryâ&#x20AC;&#x2122;s Secret Garden,â&#x20AC;? fenseless and the place so lonely a favorite spot in the backyard of Terryâ&#x20AC;&#x2122;s motherâ&#x20AC;&#x2122;s house in for her. Cry because I imagine Cottage Grove.

Slide Into New Wages This Winter!!! WE PAY UP TO $10.00/HR PLUS FREE HEALTH & DENTAL INSURANCE (UPON QUALIFYING)

PCA CHOICE RECEIVES EVEN MORE $$$ PER HOUR!

SWITCHING IS EASY...CALL TODAY! LOCAL (952) 854-9071 TOLL FREE 1-888-654-6889 Itâ&#x20AC;&#x2122;s About Time, Make the Switch!

i PERSONAL CARE ASSISTANTS i 24-HOUR ON-CALL PCAS i PCA REFERRAL BONUSES SERVICING ALL AGES THROUGHOUT MINNESOTA

Âž MA PCA PROVIDER Âž PCA CHOICE PROVIDER Âž UCARE/AXIS PROVIDER

February 10, 2007

Book Review

Raymond’s Room People with Disabilities: The Last Legally Segregated Minority? by Dawn Langton

hirty years ago, as a young man working at a facility for children with autism, Dale DiLeo was shown a tiny, hot and smelly bedroom. Reserved for up to four young men with autism, those least trusted by staff, this

“He calls the current system the “disability industrial complex,” a comparison to Eisenhower’s warning of the military industrial complex . . .” room was locked—from the outside—all night long. It was named after Raymond, the room’s perennial resident. In a new book called Raymond’s Room: Ending the Seg-

ASHLEY -

Dale DiLeo, author. sometimes in institutions, sometimes in the community, has stifled the potential of millions of people to live quality lives.

DiLeo traces his career from direct care in an institution to international consulting in the disability field. For the most part, he said, his early services, like many disability services today, were delivered in specialized, separate settings. These places were, and still are, segregated and damaging, he asserts. “I believe the disability field is still stuck in an obsolete model that is ineffective, morally wrong and resistant to change. Every day the number of people going into segregated programs far exceeds those in more integrated ones,” said DiLeo.

The 230-page book mixes memoirs of experiences, both humorous and sad, with illustration and practical advice.

Sure to be controversial, Raymond’s Room not only takes aim at institutions, but also challenges the notion that

regation of People with Disabilities, DiLeo makes a compelling case that today, people with disabilities are still locked away from the rest of society. They may not be necessarily housed in rooms like Raymond’s, but they are placed in facilities and programs run by a public monopoly unwilling to change. “People with disabilities are the last minority group in which legal segregation for housing and employment is still routinely provided,” writes DiLeo. “And their lives are controlled by one of the last publicly funded monopolies in America today.” Raymond’s Room outlines how the continued rampant segregation of people in day and residential programs,

Cont. from p. 3

Advocates Becoming Empowered expressed anger, sadness and outrage over what members considered a violation of

the well-documented history of mistreatment, neglect and devaluation of this population, we are stunned and outraged by the very fact that the relative merits of growth attenuation could, in 2006, be a topic for serious debate in this forum.”

“… Ashley’s parents said they worried they would not be able to care for her at home if she grew up.” “It is unethical and unacceptAshley’s human and civil rights: “SABE feels if Ashley did not have a disability this never would have happened. Just because someone has a disability does not mean they should be denied the basic human right to grow and mature as everyone else.” The Board of Directors of the American Association on Intellectual and Developmental Disabilities, formerly the American Association on Mental Retardation, wrote: “We see an enormous potential for abuse here, and given

able to perform intrusive and invasive medical procedures on a person or child with a disability simply to make the person easier to care for,” said Steven Taylor, director of Syracuse University’s Center on Human Policy. In a written statement, Diane Richler, President of Inclusion International, said: “Just last month we celebrated the adoption of the new United Nations Convention on the Rights of Persons with a Disability . . . Ashley’s situation teaches us that our celebrations were premature.”

In a letter to the editors of the Archives of Pediatrics and Adolescent Medicine, TASH board president Lyle Romer wrote: “This is the denial of a child’s basic right as a human being to be free from the unwarranted and unnecessary manipulation of their basic biological functions merely to sat-

The Disability Rights Education and Defense Fund wrote: “‘Benevolence’ and ‘good intentions’ have often had disastrous consequences for the disability community. Throughout history, ‘for their own good’ has motivated and justified discrimination against us….After decades of struggle to enshrine the human rights “The manipulation of a of people with disabilities in child’s physical develop- law and policy and to chalment relegates those re- lenge the overwhelming prejudice, negative attitudes and ceiving such treatment misperceptions that are widely to a less-than-human held about people with intellectual disabilities, this sad and category.” puzzling episode must not isfy the needs of a third party mark a turning point for those …Children with severe devel- hard-won gains.” ■ opmental disabilities are, first and foremost, human beings. Dave Reynolds is the editor of The manipulation of a child’s Inclusion Daily Express. Rephysical development rel- printed here with permission egates those receiving such from Inclusion Daily Express, treatment to a less-than-human the international disability category.” rights news service at www. InclusionDaily.com

WARM UP TO A NEW WAGE THIS WINTER!! e PCA Choic $12.00/hr. Up to

group homes and sheltered workshops are cutting-edge programs. He calls the current system the “disability indus-

“I believe the disability field is still stuck in an obsolete model that is ineffective, morally wrong and resistant to change.” trial complex,” a comparison to Eisenhower’s warning of the military industrial complex ceptions translate into disover forty years ago. crimination. DiLeo notes that we spend billions on services that have Said the author: “People with largely failed to deliver on their disabilities need not live in promise to provide very vul- isolation from the rest of us. nerable people decent homes Their lives need not be deand jobs. And the blame for fined by their disability. And this failure is often thrust back to the individuals themselves, “...we spend billions on with professionals saying services that have largely people are not capable or ready failed to deliver on their for such things. But, accordpromise to provide very ing to Raymond’s Room, the know-how to provide cost-ef- vulnerable people decent fective supports, for even those homes and jobs.” with the most severe disabilities, is available now for jobs they should not be subject to and homes. Still, he discusses programs that segregate them the real challenges people with for employment, housing and disabilities are up against – recreation, programs that are how our society negatively largely the result of profesperceives those who have a sional convenience. People disability, and how these per- Raymond’s - cont. on p. 10

WE ARE: i PCA Choice Provider i Traditional PCA Service Provider i Dependable & Reliable i Medical Assistance Certified OFFERING: i Personal Care Assistants i Excellent Wages and Benefits i 24-hour On-Call PCAs i PCA Referral Bonuses

Allow Us to be Your Choice!

LOCAL (952) 854-6889 TOLL FREE 1-888-654-6889 2626 East 82nd Street, Suite 260 Bloomington, Minnesota 55425

Providing “Freedom” and Independence with personal home health care

February 10, 2007

RAYMONDâ&#x20AC;&#x2122;S-

Sparing The Rod

Cont. from p. 9

with disabilities are much more condition, a place most of us capable than most people un- would agree was horribly ofderstand, and they should have fensive. Yet, there were a numopportunities to contribute to ber of people who expressed As described by Central neighborhoods, workplaces that they did not want to leave, Petz.com, â&#x20AC;&#x153;the act of positive and civic life.â&#x20AC;? and some of their families also training involves rewarding said the same thing. The reayour dog for a correct behav- According to DiLeo, one of son this happens over and over ior with food, a toy or some- the frequent responses from again is that people with disthing he loves. Positive train- the disability system to such abilities have not had the oping by definition does not in- criticism is that the system must portunity to make informed clude any physical corrections provide â&#x20AC;&#x153;choiceâ&#x20AC;? for people choices. Once people experiand instead suggests that you with disabilities from a range ence community life with the ignore any bad behavior. Since of options, including programs proper supports, in my experidogs do what works, theyâ&#x20AC;&#x2122;ll that are segregated. He notes ence, they nearly always elect realize that a certain behavior how many proponents of insti- to not go back to segregation. gets them a reward and other tutions or workshops and When you live in a situation behaviors do not. The behav- group homes say that people for so long, change can appear ior that produces the reward have chosen these options and threatening.â&#x20AC;? â&#x2013; will become more frequent.â&#x20AC;? that they report they are happy there. Said DiLeo: â&#x20AC;&#x153;I know Raymondâ&#x20AC;&#x2122;s Room is published Some guide-dog schools are that can be true, but it is an by Training Resource Netmoving toward positive train- incomplete statement. I re- work, Inc., and can be ordered ing as a means of reducing member working to help at www.raymondsroom.com stress on dogs in the field, and people move out of an old in- or 800-280-7010. resolving work-related fears stitution that was in very poor that dogs may develop of things like paratransit vehicles. As Cont. from p. 8 the population using guide dogs ages, and the general public becomes less tolerant of physical correction, guide dogs are being bred to be more sensitive to voice commands from their handlers. Traffic is also becoming more complex; quiet hybrid cars are affecting how blind handlers and their dogs judge when itâ&#x20AC;&#x2122;s safe to cross the street. In short, itâ&#x20AC;&#x2122;s much more stressful to be a guide dog today than it was when the first â&#x20AC;&#x153;Seeing Eye Dogâ&#x20AC;? was trained 78 years ago. Suzy Gray celebrating her birthday at her sisterâ&#x20AC;&#x2122;s house, shortly

Positive Reinforcement Is Most Effective for Dogs by Lolly Lijewski â&#x20AC;&#x153;We need another and perhaps a wiser and more mystical concept of animals.â&#x20AC;? (Author unknown)

nice piece of guide work as she takes me safely around a construction barrier. And I can appreciate these skills all the more thoroughly now that I underI have been a guide dog handler stand positive training what it for 23 years, and Iâ&#x20AC;&#x2122;m still took to train her to do this work. amazed every day at the mystery of the canine-human bond I was taught the traditional that makes dogs want to work method of handling a dog. The for people. While some people three main components of traare amazed at how highly ditional training are: affection trained dogs like guide dogs (praise your dog when she does have dramatically saved their something well), correction handlerâ&#x20AC;&#x2122;s lives by pulling them (correct your dog verbally or out of the way of an oncoming physically when she makes a car, I continue to experience mistake), and consistency (apawe and wonder at how my ply these techniques fairly and dogs have performed mundane consistently to get the most out tasks every day like guiding me of your relationship with your around obstacles, and safely dog). These techniques worked across streets. I can often be well, but I had always felt there heard praising my dog for a had to be a better way.

GPS

SF JO

GPSNBUJPO WJTJU

X X X B Y J T I F B M

DP UI

5FMFQIPOF 55:

I found one when I returned to The Seeing Eye in 2004 for my fifth Seeing Eye Dog. I was having severe back pain while in training, and I asked my instructor to help me develop a way to get my dog under a chair without physically muscling her into the correct position. To my surprise, he handed me a bag of crushed up biscuits. Food rewards were always forbidden at The Seeing Eye. He instructed me to sit in a chair, holding my dogâ&#x20AC;&#x2122;s leash in my hand and the bag of food behind me out of sight. As instructed, I tossed a piece of food under the chair. Instinctively my dog dove for the food. When she did, I used the leash to gently guide her back into position with her head facing forward. When she completed the circle, she got another treat. We repeated this pattern several times (about ten minutes) until my dog seemed to understand the behavior we were teaching her. Then we proceeded to another room with another kind of chair to help her learn to generalize the behavior to different places.

I was truly amazed and exhilarated. I hadnâ&#x20AC;&#x2122;t used a correction once during this training session. I was having fun and To help more guide dog hanso was my dog. dlers learn about positive trainSince then I have learned much ing, Minnesota Guide Dog more about Positive Training Users, (an affiliate of the methods. I still use corrections American Council of the when needed, but through Blind) is sponsoring a Posistudying Positive Training, my tive Training weekend workunderstanding of how dogs shop March 9 and 10, 2007, to learn (positive training is based be held at Vision Loss Reon learning theory) has grown. sources. To participate in the It has transformed my rela- workshop, handlers must be tionship with my dog. I have blind or visually impaired and used this knowledge to fine currently working with a guide tune the training she received dog. To register, call Lolly at The Seeing Eye, teaching Lijewski at 612-673-0439. â&#x2013; her to find chairs, railings, door handles and door openers,

Handi Medical is Your First Choice for Medical Products and Equipment Services. Visit Our Large Fully-Stocked Showroom Open to the Public â&#x20AC;˘ Wheelchairs (with complete repair service) â&#x20AC;˘ Walkers/canes, crutches

â&#x20AC;˘ Incontinence/Urological supplies â&#x20AC;˘ Ostomy/wound care â&#x20AC;˘ Bathroom safety aids

MUG SHOTS -

after moving here in May, 2005. It was her first birthday in MN. The room around her looks stark and cold, and the chair and board appear rigid and uncomfortable. The straight lines and dark shadows suggest an institutional atmosphere.

ings, and large windows. This photo brings the memory of my visit back to me. Muscatatuck looked to me like a combination prison, hospital, and college campus; its large yellow brick buildings set on a In the mug shot, Suzy looks grassy hillside overlooking shy and a little uneasy; a small fields and woods. and vulnerable person caught deep in an impersonal institu- Although my sister survived tion. I have been to Muscat- pretty well the years of incaratuck so I remember the tiled cerationâ&#x20AC;&#x201D;and inattention by walls, long hallways, high ceil- our familyâ&#x20AC;&#x201D;the experience left its marks on her personality and still affects her behavior today. But it did not destroy her. Now living in a group home in a neighborly little town in Minnesota and reunited with her family, Suzy has kept the same charmerâ&#x20AC;&#x2122;s smile and pranksterâ&#x20AC;&#x2122;s sense of playfulness that I remember from her baby years. But when she refuses to say goodbye to anyone leaving her or when she howls with glee on outings around town, then I remember that 40 years of incarceration have left their mark.

GREAT SERVICE & PRICES We offer 24-hour Emergency Service exclusively to our regular customers. Free UPS and deliveries to Mpls., St. Paul & Suburbs. Insurance Billing Service providers for MN Medical Assistance, Medicare, Medica, Health Partners, Preferred One, UCARE, Blue Cross/Blue Shield and many others.

Handi Medical Supply 2505 University Avenue West St. Paul, MN 55114

(651) 644-9770

Suzyâ&#x20AC;&#x2122;s mug shot reminds me of what she and many others of her generation endured. And it reminds me that many individuals still live in large, ugly institutions around this country who need their families to find and love them, and to oversee their transition into lives of dignity, independence, and community acceptance. â&#x2013;

February 10, 2007

Room to Grow Gillette’s New Adult-Care Clinic to Offer Expanded Services by Kate Edenborg

his month, Gillette Lifetime Specialty Healthcare will begin offering clinical services at a new location. The St. Paul – Phalen clinic, opening March 5th, will be twice as big as its New Brighton predecessor.

ence,” says Wagner. “Patients with a defined condition, such as cerebral palsy or spina bifida, do best receiving care with an interdisciplinary approach, where their health-care providers all are available in the same space.”

Five years ago, that pilot clinic was opened for teens and adults who were diagnosed during childhood with conditions that result in functional limitations. Although patients’ needs— and the services provided— have grown since then, the location’s size limited what the staff could offer.

Specialized Care Medical specialists increasingly recognize that adult patients have different healthcare needs than pediatric pa-

“…If we realize during an appointment that someone needs a seating consultation, we can “Our new larger space will sup- call in a seating practiport the expansion of services, tioner right then.” such as therapeutic recreation and dietary programs,” says Ronna Linroth, manager of adult outpatient services at Gillette Lifetime.

location improves efficiency for patients and staff. “We often have the necessary staff and resources right in the next room,” Wagner says. “For example, if we realize during an appointment that someone needs a seating consultation, we can call in a seating practiAn integrated approach to care tioner right then.” goes well beyond coordinating appointments with multiple The relocating also enhances providers. The integrated-team the patient-friendly environmodel helps clinic staff ad- ment. “The new space allows dress patients’ social, emo- us to meet the privacy needs of tional and functional needs. It adolescents and young adults, also includes having conver- and the increasing social-sersations with the patient and vice needs of adults as they caregivers to create a long- age,” says Carol Nelson, clinic term plan for the patient’s care. social worker. by providers with a depth of knowledge,” Wagner says. “Our specialists have that depth, and are able to see patterns that allow them to ask key questions and take the proper steps to ensure the best possible care.”

Space Accommodations While the new clinic offers many of the services available at other Gillette locations, it does so in an environment tailored to adults. For example, the clinic has the equipment and trained staff necessary to lift, transfer, weigh, and otherwise accommodate adult patients needs.

Closer to “Home” Gillette also sought the benefits of having the clinic closer to their main location. “Our patients and families have a strong connection with the St. Paul clinic, and our relocation closer to the St. Paul site will improve access to other services and collaborations with specialists,” Linroth says.

tients. The new clinic will provide even more focused, integrated care for its adult patients, including people with cerebral palsy, spina bifida and In addition, a medical direc- neuromuscular conditions, as tor, Robert Wagner, M.D has well as those seeking post-pobeen added. “We are a highly lio and young-adult services. collaborative, integrated clinic, where patients often get “Conditions that affect the ena one-stop shopping experi- tire body should be addressed Wagner stresses that the new The new clinic’s proximity to

the St. Paul campus also might help ease the transition for Gillette patients who are moving from pediatric to adult care. “We have the luxury of continuing to see patients who have been with us as children,” Wagner says. “We provide

them with the quality care they’ve come to expect—and need.” ■ For information about Gillette Lifetime Specialty Healthcare, call 651-636-9443 or visit www.gillettechildrens.org.

The friendly corner drugstore is not a thing of the past!

SCHNEIDER DRUG We accept all insurance, including Health Partners. Free prescription delivery. Specialty gift items and greeting cards.

3400 University Ave. SE, Mpls. 612-379-7232 • M-F 8-7 Sat. 8-6 ¼ mile west of Hwy. 280 Across from KSTP

February 10, 2007

Accessible Performances The following performances will be Audio Described (AD) for people who are blind or have low vision, or Interpreted in American Sign Language (ASL) for people who are deaf or hard of hearing. Selected performances offer reduced admission prices for the patron and one companion. When calling a box office, confirm the service (ASL or AD), date, time, ticket price and anything else needed, e.g. length of performance, etc. If you attend a show, please share your feedback with the performing organization, interpreter, and VSA arts of Minnesota. Accessible performance information is compiled by VSA arts of Minnesota, 612-332-3888 or www.vsaartsmn.com. Also see section of Accessible Movie Theaters. Disney’s HS Musical Jan. 3 - Mar. 11 Children’s Theatre Co., 2400 - 3rd Ave. S., Mpls. AD & ASL: Fri., Feb. 2, 8:00 p.m. Tix: Mention the VSA offer for $13 tix; reg disc is $20; 612-874-0400; Web: www. childrenstheatre.org Tale of a West Texas Marsupial Girl Jan. 16 - Feb. 25 Children’s Theatre Co., 2400 - 3rd Ave. S., Mpls. AD & ASL: Fri., Feb. 16, 7:30 p.m. Tix: Mention VSA Offer for $13 tickets; reg disc is $20; 612-874-0400; Web: www. childrenstheatre.org The Glass Menagerie Jan. 20 - Mar. 25 Guthrie Theater, 818 - 2nd St. S., Mpls. AD: Fri., Feb. 16, 7:30 p.m.; Sat., Feb. 17, 1:00 p.m. (sensory tour 10:30). ASL: Fri., Feb. 23, 7:30 p.m.; Thurs., Mar. 1, 7:30 p.m. Tix: Reduced to $17; reg. $22-$52; 612-377-2224, TTY: 612377-6626; Web: www.guthrie theater.org

Young MLK and a Child Shall Lead Feb. 2 - 25 SteppingStone Theatre at L&mark Cntr, 75 W. 5th St., St. Paul. ASL: Sun., Feb. 11, 2:00 p.m. AD: Tue, Feb. 13, 11:00 a.m. Tix: $11, student/sr $9; 651-225-9265; Web: www. steppinstonetheatre.org The Swan Feb. 2 - Mar. 11 Jungle Theater 2951 Lyndale Ave S, Mpls. AD: Thurs., Feb. 22, 7:30 p.m. Tix: Reduced to $8 (reg. $24-36); 612-8227063; Web: www.jungle theater.com Love, Janis Feb. 6 - Apr. 15 Ordway Cntr for the Performing Arts Main Hall, 345 Washington, St. Paul. Touring show. ASL: Fri., Feb. 23, 8:00 p.m. AD: Sat., Feb. 24, 2:00 p.m. Tix: 651-224-4222, TTY: 651-282-3100; Web: www. ordway.org/services/ access.asp H&ing Down the Names Feb. 8 - 11 UMD Theatre, Marshall Performing Arts Cntr, 1215 Ordean Crt, Duluth. ASL: Sun., Feb. 11, 2:00 p.m. Tix: $13, $10 sr/ student, $6 UMD student/ child, 218-726-8561; Web: www.d.umn.edu/theatre

Amadeus Jan. 26 - Feb. 18 Starting Gate Productions at Mounds Theatre, 1029 Hudson Rd, St. Paul. AD: Sun., Feb. 11, 2:00 p.m. Tix: Reduced to $10; Reg. $18, $16 student/sr; 651-645-3503; Web: www.startinggate.org or www.moundstheatre.org Thom Pain (based on nothing) Feb. 8 - 24 Isl& of the Blue Dolphins Emigrant Theater at Mixed Jan. 31 - Feb. 18 Blood Theatre, 1501 S. 4th St., Youth Performance Co. at Mpls. AD & ASL: Sun., Feb. 11, Howard Conn Fine Arts Cntr, 3:00 p.m.; sensory tour at 2:30; 1900 Nicollet Ave., Mpls. AD Tix: $14, $10 students & srs, & ASL: Sun., Feb. 11, 2:00 disability aides receive comp. p.m. Tix: Reduced to ½ price; entry; 612-338-6131; Web: reg. $10-8; adv reserv. reqd www.emigranttheater.org for AD; 612-623-9080; confirm avail. of accessible bathrm A Midsummer Night’s (under construction); Web: Dream Feb. 9 - 18 www.youthperformanceco.com Cross Community Players at Susannah Crosswinds United Methodist Church, 15051 Weaver Lake Feb. 1 - Mar. 4 Theater Latte Da at Loring Rd, Maple Grove. ASL: Fri., Playhouse, 1633 Hennepin Feb. 16, 7:30 p.m. Tix: ReAve. S., Mpls. ASL & AD: duced to 5.50 for AD/ASL Thurs., Feb. 15, 7:30 p.m.Tix: patrons, 763-391-2787; EReduced to $8 (reg. $15 that mail: mail@crossplayers.org; 651-209-6689 Web: www.crossplayers.org night); TicketWorks; Web: www. The Grapes of Wrath latteda.org or www.ticket Feb. 10 - 18 works.com MN Opera Co. at Ordway Cntr Command Performance: for Performing Arts, 345 WashA Musical Review ington St., St. Paul; AD: Tues., Feb. 2 - 25 Feb. 13, 7:30 p.m.; Tix: ReBloomington Civic Theatre at duced to ½ price for AD paBlmngtn Cntr for Arts, 1800 trons (disc code “R”); 612-333W. Old Shakopee Rd. AD: 6669; TTY: 612-729-6023; Sat., Feb. 10, 7:30 p.m. ASL: Web: www.mnopera.org Sat., Feb. 24, 7:30 p.m. Tix: Reduc. to $18 (reg. $19-25); 952-563-8575; Web: www. bloomingtoncivictheatre.org

Oklahoma! Feb. 14 - 25 Fargo-Moorhead Community Theatre, 333 4th St. S., Fargo. AD: Sat., Feb. 24, 7:00 p.m. ASL: upon request in adv. Tix: Reduced to $7.50; 701-2356778, 877-687-7469; Web: www.fmct.org

320-363-5700; E-mail: DWolford@csbsju.edu; Web: www.csbsju.edu/finearts

The Cryptogram Feb. 16 - Mar. 3 Walking Shadow Theatre Co. at Mpls. Theatre Garage, 711 W. Franklin Ave., Mpls. ASL: Fri., Feb. 23, 7:30 p.m. Tix: Murder on the Nile Reduced to $7 (reg. $16-14), Feb. 15 - Mar. 4 612-375-0300; Web: www. Bloomington Art Cntr Gallery walkingshadowcompany.org Players at Blmngtn Cntr for Arts Black Box Theater, 1800 W. The Voice of the Prairie Old Shakopee Rd. AD & ASL: Feb. 16 - Mar. 11 Sat., Mar. 3, 1:00 p.m. Tix: Re- Theatre in the Round Players, duced to $6; reg. $15, $12 sr/ 245 Cedar Ave., Mpls. AD: student; 952-563-8587; Web: Sun., Mar. 11, 2:00 p.m. Tix: www.bloomingtonartCntr.com $20, sr/student disc; 612-3333010; Web: www.theatrein Blue theround.org Feb. 15 - Mar. 11 Penumbra Theatre, Hallie Q. GLBT Theatre for Brown/Martin Luther King Mainstream Audiences Cntr, 270 N. Kent St., St. Paul. Feb. 18 ASL: Sat., Feb. 24, 8:00 p.m. Mayflower United Church of Tix: $15-40; 651-224-3180 Christ, 106 E Diamond Lake (specify ASL); Web: www. Rd (at I-35W), Mpls. Parents, penumbratheatre.org Families & Friends of Lesbians & Gays (PFLAG) panel Addicted: A Comedy of discussion on GLBT-themed Substance theatre intended for mainFeb. 16 - 17 stream audiences. Panel inBenedicta Arts Cntr Gorecki cludes actors, directors, proTheater features Mark Lud- ducers, drama critics, & other holm, College of St Ben-edict, Twin Cities theatre people. St. Joseph. ASL: Sat., Feb. 17, ASL: Sun., Feb. 18, 2:00 p.m. 9:30 p.m. Tix: $20; sr/youth & Tix: By donation. aid rate avail upon request;

ACCESSIBLE MOVIE THEATERS Accessible Movie Theaters The movie complexes listed below offer MoPix-equipped captioning or description services. For show times, call the theater; sign up to receive their e-mail list; contact MN Open Captioned Films, www.mnocfilms.org/ movies.html or Rear Window Captioned Film, Web: http:/ /ncam.wgbh.org/mopix/ nowshowing. html#mn

level lot between Sears and Kohl’s. Accessible films in Auditorium 4. Science Museum of MN Omnitheater, 120 Kellogg Blvd. W., St. Paul. Rear view captioning and DVS for most films in the Omnitheater or the 3D Cinema. Showtimes vary but are approximately hourly during regular museum hours: Mon-Wed 9:30 a.m.- 5:00 p.m., Thur-Sat. 9:30 a.m. - 9:00 p.m. , Sun. 12:00 noon - 5:00 p.m. TTY 651-221-4585; E-mail: info@smm.org ; Web: www.smm.org/visitorinfo/ hours/showtimes_dynamic. php or www.smm.org/info/ accessibility.php.

Crown Theater Block E Movie Complex, 600 Hennepin Ave., third floor, Mpls. Enter parking ramp on 7th St next to the Hard Rock Café. 612-338-1466. Accessible films in Auditoriums 2 and 12. Note: DVS patrons: If show is in Theatre 2, request headset with Letter C. If show Lakes 10 Theatre, 4351 is in Theatre 12, request head- Stebner Rd., Hermantown. set with Letter G. 12 Accessible Parking spaces near theater. Movie AMC Eden Prairie Mall 18 Line: 218-729-0335; EmerTheatres, 4000 Flying Cloud gency: 218-729-0334; Fax: Dr at Eden Prairie Shopping 218-729-0334; E-mail: Sfen Center, Hwy 212 and 494, nessey@cectheatres.com. ■ 952-656-0010. Park in upper

An American Vision: Henry Francis du Pont’s Winterthur Museum Feb. 18 - May 6 Mpls. Institute of Arts, Target Gallery, 2400 3rd Ave. S., Mpls. ASL: Sun., Mar. 4, 2:00 p.m. Interpreted exhibit tour begins by the Info Desk in the lobby. Tix: special exhibition admn charged; free interpreted tour ; 612-870-3131; TTY: 612-870-3132; E-mail: dhegstro@artsmia.org; Web: www.artsmia.org

AD: Sun., Mar. 18, 2:30 p.m.; tactile tour 2:00; reg. w/the theatre. ASL: Fri., Mar. 23, 7:30 p.m. Tix: $20 ($15 sr, student, child under 12, groups). 612-721-2535; Email: info@hobt.org; Web: www.hobt.org

The Pope & the Witch Mar. 1 - 9 UofM Theatre at Rarig Cntr, 330 - 21st Ave. S., Mpls. ASL: Fri., Mar. 9, 8:00 p.m. Tix: $12-14 at 612-624-2345; Email: utheatre@umn.edu; Web: http://theatre.umn.edu

Don Juan Giovanni Mar. 3 - June 24 Theatre de la Jeune Lune, 105 N. First St., Mpls. AD: Sun., Mar. 18, 7:00 p.m. ASL: TBA. Tix: Reduced to $13; reg. $20; TicketWorks 612-333-6200 or 612-332-3968x100; Web: www.jeunelune.org

Circle Around the Isl& Mar. 3 - 18 Mu Performing Arts at Guthrie Theater – Dowling Studio, 818 2nd St. S., Mpls. AD: Sat., Mar. 10, 7:30 p.m. ASL: TBA. Tix: $18?, 612-377-2224; Orphan Train, the Musical Web: www.muperforming Feb. 24 - Apr. 1 arts.org or www.guthrie History Theatre, 30 E. 10th St., theater.org St. Paul. AD: Sun., Mar. 4, 2:00 p.m. ASL: Sun., Mar. 18, ASL Storytelling w/Kari Sipple 2:00 p.m. Tix: Reduced to $15; Mar. 3, Apr.14 651-292-4323; Web: www. Barnes & Noble children’s historytheatre.com book’s area, Mankato. ASL: Sat., Mar. 3, 10:00 a.m.; Free. Doubt Feb. 27 - Mar. 4 St. Paul Public Library Touring show at Historic State Deaf Storytime Theatre, 805 Hennepin Ave. Mar. 3, Apr. 7, May 5 S., Mpls. AD: Sat. Mar. 3, Merriam Park Branch Library, 2:00 p.m. ASL: Sun., Mar. 4, 1831 Marshall Ave. St. Paul. 1:00 p.m. Tix: $30-60; AD Deaf storyteller Estella offered if reqd in adv: 612- Bustamante ASL: Sat., Feb. 3, 373-5639 or 5609; hotline 10:30 a.m.; FM listening as612-373-5650; TTY: 612- sistance also avail. Tix: free; 373-5655; E-mail: accessible 651-642-0385; TTY: 651@orpheum.com; Web: www. 298-4184; Web: www.stpaul. hennepintheatredistrict.org/ lib.mn.us/programs/aslguestservices/aslad/ storytimes.html

Journey of the Drum: A Taiko Fable Mar. 2 - 22 SteppingStone Theatre & Theater Mu at L&mark Cntr, 75 W. 5th St., St. Paul. ASL: Sun., Mar. 11, 2:00 p.m. AD: Tues., Mar. 13, 11:00 a.m. Tix: $11, student/sr $9; 651-225-9265; Web: www.steppingstone theatre.org Zombie Prom Mar. 2 - 25 Mpls. Musical Theatre at Hennepin Stages, 824 Hennepin Ave., Mpls. AD & ASL: Sun., Mar. 11, 7:30 p.m. Tix: Reduced to $17 (reg. $24); 612-673-0404; 612-3735639 or 5609; TTY: 612-3735655; E-mail: accessible@ orpheum.com; Web: www. aboutmmt.org or www.henn epintheatredistrict.org/ guestservices/aslad/

Camelot Mar. 6 - 17 Touring show at Ordway Cntr for the Performing Arts, 345 Washington, St. Paul. AD: Sat., Mar. 10, 2:00 p.m. ASL: Fri., Mar. 16, 8:00 p.m. Tix: 651-224-4222, TTY: 651282-3100; Web: www.ord way.org/services/access.asp Huck Finn Mar. 6 - Apr. 7 Children’s Theatre Co., 2400 3rd Ave. S., Mpls. AD & ASL: Wed., Mar. 28, 10:30 a.m.; Fri., Mar. 30, 7:30 p.m. Tix: Mention VSA offer for $13 tix; reg disc is $20; 612-874-0400; Web: www. childrenstheatre.org

Life is a Dream Mar. 8 - 25 UMD Theatre at Marshall Performing Arts Cntr, UMD Campus, 1215 Ordean Crt, Duluth. Invigorate the Common ASL: Sun., Mar. 25, 2:00 p.m. Well: When Water is Frozen Tix: $13, $10 sr/student, $6 Mar. 2 - 25 UMD student/child, 218-726In the Heart of the Beast Pup- 8561; Web: www.d.umn.edu/ pet & Mask Theatre in col- theatre laboration w/the Tomales Bay Inst. at 1500 E. Lake St., Mpls. Perform. - cont. on p. 13

February 10, 2007

PERFORM. -

Cont. from p. 12

The Mikado, or the Town of Titipu Mar. 8 - Apr. 1 Gilbert & Sullivan Very Light Opera Co. at Howard Conn Fine Arts Cntr, 1900 Nicollet Ave. S., Mpls.; AD: Sat., Mar. 24, 3:00 p.m.; 2:15 p.m. tactile tour. Note: chk on bathrm access. due to renovation. Tix: $15, children under 12 - $8, GSVLOC Tix, 1412 W. 47th St., Mpls. 55419; after Mar. 1: 651-255-6947 M-F 11:00-2:00 p.m.; Web: www.gsvloc.org The Pajama Game Mar. 9 - 25 Mixed Blood Theatre at Sabathani Theater, 310 E. 38th St, Mpls. AD, ASL & Captioning: Fri., Mar. 23, 7:30 p.m. Tix: Reduced by $5, reg. $24; 612-338-6131 or E-mail: boxoffice@mixedblood.com; Web: www.mixedblood.com The Chosen Mar. 9 - Apr. 1 Park Sq Theatre, 408 St Peter St. (20 W. 7th Place), St. Paul. AD & ASL: Sat., Mar. 24, 7:30 p.m. Tix: Reduced to ½ price; 651-291-7005; Web: www.parksquaretheatre.org The Merchant of Venice Mar. 10 - May 6 Guthrie Theater, Wurtele Thrust, 818 2nd St. S., Mpls. AD: Sat., Mar. 31, 1:00 p.m. (sensory tour 10:30); Fri., Apr. 6, 7:30 p.m. ASL: Fri., Apr. 13, 7:30 p.m. Tix: $17 reduced; reg. $22-$52; 612-377-2224; TTY: 612-377-6626; Web: www.guthrietheater.org Trix Bruce: The Hearing World Around Me Mar. 16 CLS Signers host ASL performer Trix Bruce at Central Lakes College Chalberg Theatre, 501 W. College Dr, Brainerd; Fri, Mar. 16, 7:00 p.m. ASL/Voice Interpreter: Tix: $5: Julie at 218-851-9315 (voice); E-mail: clcsigners@ yahoo.com; Web: www.Trix Bruce.com or www.clcmn.edu Trix Bruce Workshop: “Face-Painting” with Non-Manual Signals Mar. 17 Cragun’s on Gull Lake, 11000 Cragun’s Dr, Brainerd. ASL: Sat., Mar. 17, 9 a.m. to 4 p.m.; Reg by Mar. 1, $45; $55 at door. Six clock hrs RID CEU. Send fee to Trix Bruce, 1429 D Ave PMB 362, Snohomish, WA 98290; RSVP: E-mail: info@trixbruce.com

The Light in the Piazza Mar. 20 - 25 Orpheum Theatre features a touring show, 910 Hennepin Ave. S., Mpls. ASL: Sun., Mar. 25, 1:00 p.m. Tix: $27-72; AD offer if req in adv: 612-3735639 or 5609; Hotline: 612373-5650; TTY: 612-3735655; E-mail: accessible@ orpheum.com; Web: www. hennepintheatredistrict.org/ guestservices/aslad/ Arsenic & Old Lace Mar. 22 - Apr. 7, 2006 Tin Roof Theatre Co. at Main Ave Theatre, 716 Main Ave., Fargo. AD: Sat., Mar. 24, 7:30 p.m. Tix: $8 Reduced (reg. $15, student/sr $10); 701-3065843; Web: www.tinroof theatre.com Two One-Act Plays: Cheers & Tears for the Ears & Helen of Boyd Mar. 23 - 25 Prime Time Players & Theatre Assoc of Stillwater at Art Rageous Pottery, 321 S. Main St, Stillwater. AD & ASL: If reqd by Mar. 9 for Sun., Mar. 25, 3:00 p.m.; Tix: $15, $10 students (Reduced to $10 for AD/ASL patron/companion); 651-439-0993; E-mail: info@ StillwaterTheatre.org; Web: www.stillwatertheatre.org MACT FEST Mar. 29 - Apr. 1 MN Assn. of Community Theatres (MACT) Festival at the Barn Theatre, 321 SW 4th St., Willmar. 14 plays, workshops, opening reception, closing party, awards brunch; AD & ASL Req needed by Mar. 1. Play sessions: Thurs. Mar. 29, 7:00 p.m.; Fri. Mar. 30, 12:30 & 7:00 p.m.; Sat. Mar. 31, 9:00 a.m., 1:30 & 7:00 p.m.; Awards: Sun. Apr. 1, 10:30 a.m. at Holiday Inn, 2100 Hwy 12 E; Wkshps: Thurs. Mar. 29, 10:00 a.m. & 2:00 p.m. & Fri. Mar. 30, 9:00 & 10:30 a.m. Tix: $10 per play session or $90 for Festival. 952-8849676 or MACT Hot-line, 612706-1456 or 800-290-2428; Web: www.mact.net or www.TheBarnTheatre.com Where the Girls Are: A Musical Celebration of American Women Mar. 29 - Apr. 7 Blue Umbrella Prod. at Lowry Lab Theater, Lowry Bldg, 16 West 5th St., dwntwn St. Paul; enteron both Wabasha & St. Peter. ASL: Fri., Mar. 30, 7:30 p.m. AD: Sat., Apr. 7, 7:30 p.m. Tix: Red. to $8 (reg. $15); 651-646-2943; Web: www. blueumbrellaproductions.net or www.theaterspaceproject.org

Target Marketing at it’s finest! Advertise in Access Press and reach thousands in the disability community every month.

PARENT VIEW every six months for growth • 5 standers (30 minutes 2 times per day...requires two persons for this transition) • 4 gait trainers (same as above) • 2 bath chairs • 31 hours a day of care and over $50,000/yr of personal direct care and nursing care. • $20,000-40,000 in prescription drugs • 4-6 hospitalizations per year • Countless diapers, inserts, tubing, syringes, chux pads, g-tube food

Cont. from p. 3

edied through physical movement and standing devices, but through medicines and surgery. He risks broken bones from difficult transfers and skin infections from simple things like ingrown hair & nails. Sweat glands and hair growth under arms and in the pubic area often cause infection and breakdown of the skin due to improper hygiene from caregivers who cannot get the person in the right position to clean and dry.

serve us more than we can ever serve them. They teach us to reach for a deeper purpose in our lives. We then have a greater love, tolerance and understanding for others and the world around us. Unfortunately, we live in a world that won’t get it, because these are gifts that cannot be translated into dollars and cents.

it is a difficult decision made by the parents who must consider the trade-off with the countless procedures mentioned above. As long as her parents are with her, her chances for a loving, quality life are far better than any other options available in this selfish, self-centered age. Health-care institutions cannot and will not protect her. Lastly, it’s important to note Maybe one day they will. that the Pillow Angel is loved. The procedures may be a com- I pray for a brighter future for promise to Ashley’s health, but all of us. ■

The list will only get longer as The question is... How will the child grows. Ashley’s three medical interventions compromise her Tell Joe Public about the pain- health, quality of life, and level ful surgery that puts a steel rod of care? In light of what I just in the back of a 9 year old. Ask outlined, does it seem so inhuthem how you look when your man and undignified? legs grow but your torso can’t? The child can never bend over So why don’t we talk publicly or twist side to side, but sits up about putting our children like a champ!! And since sit- through these procedures? ting straight is socially accept- Because the public will say, able, everyone comments on “These children are why our how great the kid looks! Tell healthcare costs are so high.” them about heel-cord length- And, “Why don’t you just let ening and botox in the sphinc- them die...their lives are unter? dignified and without purpose?” One might argue that My son has wonder- our children are the ones on ful caregivers. I consider my- the front lines keeping mediself very fortunate because I cine on the cutting edge to can pay a fair wage for this help the greater good. difficult work. They adore my son. They love us like family The secret our children posand we feel the same. Yet, they sess, without words, is that they would NEVER want to do this are the gift to the giver. They without me. They could

“In light of what I just outlined, does [the Ashley Treatment] seem so inhuman and undignified?” NEVER look after Nathaniel like I do. They are concerned for my health as much as my son’s, because they know he will not make it without me. I am 43 years old. I have 30 extra lbs, I am sleep deprived and I have a bad neck and back from all the lifting. I pray for sleep so I can have enough energy to workout so I can lift weights and carry Nathaniel for as long as I possibly can. My son is 4’6" and 62 lbs. My saddest day will be the day I cannot lift him in my arms to move him to a more comfortable position. This morning, at 3:00 a.m., I moved him nine times from bed to seat to floor and back. One day I will not be able to do this...who will? And how will it compromise his health? If he lives in any kind of assisted living facility, the care will be minimal, because the patient-to-caregiver ratio is high. So, he will get more bed sores, skin breakdown and muscle deterioration, which will inevitably cause infection and often times pneumonia, contractures, painful arthritis and greater respiratory diseases that will not be rem-

The Minnesota State Council on Disability

Town Hall Forum on Transportation Issues Monday, April 2, 1:30 p.m. – 3:30 p.m. Available via videoconferencing and web streaming We want to hear from you about your experience with non-emergency transportation services. *Overview of the current transportation systems within Minnesota *Discuss the current brokerage system in the Metro area. Register by contacting the Minnesota State Council on Disability or for more information, visit our website at www.disability.state.mn.us

Reasonable accommodation requests should be made during registration.

council.disability@state.mn.us 121 East 7th Place Suite 107, St. Paul, MN 55101 651-296-6785 V/TTY or 1-800-945-8913 V/TTY Your Technical Assistance and Training Resource

The Glass Menagerie by Tennessee Williams directed by Joe Dowling PERFORMANCES INTERPRETED IN

AMERICAN SIGN LANGUAGE: • Friday, February 23 at 7:30 p.m. • Thursday, March 1 at 7:30 p.m. PERFORMANCES

AUDIO DESCRIBED: • Friday, February 16 at 7:30 p.m. • Saturday, February 17 at 1 p.m. (sensory tour is available at 10:30 a.m.)

Tickets $17 for patrons who use the ASL or AD service and for one companion.

Now – March ,  McGuire Proscenium Stage

612.377.2224 | TTY 612.377.6626 | WWW.GUTHRIETHEATER.ORG SPONSORED BY

February 10, 2007

MINIMUM WAGE -

Cont. from p.1

ductivity of a worker with a disability doing that job to a worker without a disability. For example, if the average

rate wages. After surveying a random sample of work centers and businesses across the country, the GAO found that the Labor Department was not â&#x20AC;&#x153;â&#x20AC;&#x2DC;Commensurate wageâ&#x20AC;&#x2122; ensuring that workers were is an Orwellian tag for a getting â&#x20AC;&#x153;the correct wages.â&#x20AC;? The GAO also said the Labor law that legalizes in- Department did not have acequality.â&#x20AC;? curate data to â&#x20AC;&#x153;manage the programâ&#x20AC;? and â&#x20AC;&#x153;ensure compliance wage paid for product assem- by employers.â&#x20AC;? bly is $8.00 per hour, and a disabled worker can only per- The Labor Department acform at half the rate of a worker knowledged its oversight of without a disability, the com- enforcement was inadequate mensurate wage would be $4 and pledged to improve the per hour. program. Employers must re-evaluate the productivity of commensurate-wage workers every six months and adjust wages accordingly. In its report, the GAO criticized the Labor Department for inadequate oversight of employers paying commensu-

â&#x20AC;&#x153;Itâ&#x20AC;&#x2122;s a matter of being integrated into the community and being included into the mainTony DiRienzi, executive di- streamâ&#x20AC;Ś and itâ&#x20AC;&#x2122;s a minimum,â&#x20AC;? rector of the Arizona State- said DiRienzi. wide Independent Living Council, said commensurate Other supporters of a uniform wages are one of many battles minimum-wage law include people with disabilities are the Arizona Governorâ&#x20AC;&#x2122;s Counfighting. cil on Developmental Disabilities, the AFL-CIO and the disâ&#x20AC;&#x153;People have been underval- ability-rights group Arc of ued because of their disabil- Arizona.

A GREA T RESOURCE! GREAT

DirectAbility.com DirectAbility is a comprehensive, ever-expanding, award-winning, Internet directory devoted to disability-related products, services, resources and information throughout the state. Online at www.directability.com. Âł+RZ FDQ , JR WR ZRUN DQG NHHS P\ KHDOWK LQVXUDQFH"Â´ Â´+RZ GR , UHDOO\ NQRZ ZKLFK EHQHILW ,ÂˇP RQ"Âľ

Â´,V WKHUH D OLPLW WR KRZ PXFK , FDQ HDUQ RQ 66',"Âľ

Âł66, 66', :KDWÂśV WKH GLIIHUHQFH"Â´

Â´,5:( " " " :KDW GRHV WKDW PHDQ"Â´

0DLQ 77< 7ROO )UHH ZZZ PQZRUNLQFHQWLYHV FRP +HOSLQJ SHRSOH ZLWK GLVDELOLWLHV JHW EDFN WR ZRUN ZLWK FOHDU DFFXUDWH LQIRUPDWLRQ DERXW HIIHFWV RI ZRUN RQ EHQHILWV

3((5 0(1725,1*

,1'(3(1'(17 /,9,1* ,/ 6.,//6

,1)250$7,21 5()(55$/

5$03 &2168/7,1*

0HWURSROLWDQ &HQWHU IRU ,QGHSHQGHQW /LYLQJ

3(5621$/ $66,67$1&( 6(59,&(6 3$6

<287+ 75$16,7,21 6(59,&(6

$'92&$&<

! " #$ % ! " &&' ! " ( ) * +,--... /% / $ 0

According to the GAO, the majority of employers paying sub-minimum wages are nonprofit â&#x20AC;&#x153;work centers.â&#x20AC;? These centers often run â&#x20AC;&#x153;sheltered workshopsâ&#x20AC;? in which only people with disabilities work, performing packaging, assembly or manufacturing jobs. Some centers also contract with businesses in the community, like grocery stores and restau-

authored a report on the issue abilities competitive wages, in 2003. benefits and adequate work insurance. Blanck suggests While Blanck says sheltered more tax incentives for emwork can serve as a form of ployers and better workplace vocational rehabilitation for accommodations for people some people, he said many with disabilities. others are â&#x20AC;&#x153;stuck in those jobs for lifeâ&#x20AC;? despite their potential But Russell, who has written to be integrated into better- extensively on social and ecopaying employment. nomic aspects of disability, said both the segregation of â&#x20AC;&#x153;The challenge with the shel- disabled employees in sheltered workshop environment,â&#x20AC;? tered workshops and the laws said Blanck, â&#x20AC;&#x153;[is] that although permitting sub-minimal wages many people with severe dis- should be eliminated.

CEO Randy Gray, himself the father of a son with autism, told TNS that companies should not have to pay minimum wages to people with severe disabilities because â&#x20AC;&#x153;that would be charity.â&#x20AC;?

â&#x20AC;&#x153;CEO Randy Gray [said that] companies should not have to pay minimum wages to people with severe disabilities because â&#x20AC;&#x153;that would be â&#x20AC;&#x153;If an individual is at five per- charity.â&#x20AC;? cent productivity, why should an employer or anybody have abilities in sheltered workto pay more than five percent?â&#x20AC;? shops are appropriately placed Gray said. there and [sheltered workshops] do serve an important Gray and other proponents say function, many people with the sheltered-workshop model disabilities in sheltered workis necessary to help people shops do not necessarily need transition to gainful employ- to be there. In fact, their skill ment. But others say that goal levels are quite high, and they is not being met. Peter Blanck, often stay in these sheltered a law professor at Syracuse workshops much longer than University and chair of the dis- they should.â&#x20AC;? ability-focused Burton Blatt Institute, has studied thousands The next challenge, said of people employed in shel- Blanck, is to â&#x20AC;&#x153;make work payâ&#x20AC;? tered workshops and co- and provide people with dis-

â&#x20AC;&#x153;All laborers should be paid at least a minimum wage, and preferably a living wage,â&#x20AC;? Russell, who uses a wheelchair, told TNS. â&#x20AC;&#x153;That is the only way to raise the disabled workers in question here to an equal economic level with nondisabled workers and lift some of them up out of a belowpoverty-level existence. To be paid anything less is to further enslave the disabled worker more than workers in general are already enslaved.â&#x20AC;? â&#x2013; ÂŠ 2007 The NewStandard. [http://newstandardnews. net/ content/index.cfm/items/ 4044] All rights reserved. The NewStandard is a nonprofit publisher that encourages noncommercial reproduction of its content. www.new standardnews.net

Selected Excerpts from the TREATY - Cont. from p.1 Convention on the the principles the CRPD to be fully utilized, the United Rights of Persons with Disabilities ADA; promotes are entirely consis- States needs to become a States Article 1: Purpose The purpose of the present Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.

Âł:KDW LV D 7ULDO :RUN 3HULRG"Â´

*(7 $16:(56

6833257 *52836

ity,â&#x20AC;? DiRienzi told The rants, and employ workers there NewStandard, pointing out for sub-minimum wages. that it was once legal to pay women and children less, too. At the Arizona-based Marc Center, a nonprofit corporaDiRienzi, who has post-polio tion serving people with dissyndrome and uses a wheel- abilities, about 90 percent of chair, acknowledges the eco- their 500 employees make benomic impact of the minimum- low the minimum wage. The wage hike on organizations Center contracts with about employing people with dis- 65 companies for jobs that inabilities. But he said all people, clude bulk mailing, running regardless of their productiv- shrink-wrap and label maity, should be paid at least the chines, and filling bottles with cleaning solutions. minimum wage.

Article 5: Equality and nondiscrimination States Parties recognize that all persons are equal before and under the law and are entitled without any discrimination to the equal protection and equal benefit of the law. Article 6: Women with disabilities States Parties recognize that women and girls with disabilities are subject to multiple discrimination, and in this regard shall take measures to ensure the full and equal enjoyment by them of all human rights and fundamental freedoms. Article 7: Children with disabilities In all actions concerning children with disabilities, the best interests of the child shall be a primary consideration.

Article 15: Freedom from torture or cruel, inhuman or degrading treatment or punishment In particular, no one shall be subjected without his or her free consent to medical or scientific experimentation. Article 19: Living independently and being included in the community Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement. Article 22: Respect for privacy No person with disabilities, regardless of place of residence or living arrangements, shall be subjected to arbitrary or unlawful interference with his or her privacy. Article 24: Education States Parties shall ensure that persons with disabilities can access an inclusive, quality and free primary education and secondary education on an equal basis with others in the communities in which they live. â&#x2013;

Full Text of the CRPD: www.un.org/esa/socdev/enable/rights/convtexte.htm

tent with the original intent of the drafters of the ADA. The CRPD also complements the ADA by requiring that people with disabilities and their representative organizations be consulted by government in all decisions affecting their lives. This requirement of consultation is not seen as a favor, but rather a right of disabled people, and one that promotes respect for the inherent dignity of people with disabilities. Will the US Sign? In reviewing the CRPD, it may be seen that there are many provisions that could bolster and support the work of disability advocates on a variety of issues here in the United States. However, for the CRPD

Party to the Convention. Only then will the provisions of the CRPD become legally binding upon the government. At present the United States is undecided as to whether it will even sign the Convention, let alone become a States Party. If you are interested in encouraging the U.S. to join with other countries in supporting this historic Convention, please contact your Senator and ask them to encourage the President to sign and ratify the CRPD. Though the CRPD negotiations have ended, it is never too late to say â&#x20AC;&#x153;Nothing About Us Without Us,â&#x20AC;? and do your part to promote the full enjoyment of all human rights by all people with disabilities, including here in the United States! â&#x2013;

Further resources To contact your Senator: Senator Norm Coleman 202-224-5641, Fax-202-224-1152 Senator Amy Klobuchar 202-224-3244, Fax-202-228-2186 UN Department of Economic and Social Affairs: www.un.org/esa/socdev/enable/index.html Disabled Peoplesâ&#x20AC;&#x2122; International Ratification Toolkit (stay tuned for an Implementation Toolkit coming soon!): www.icrpd.net

February 10, 2007

Access To Employment Employment ads are $16-$17 per col. inch. Feb 28 is the deadline for the March 10 issue. Mail to: ACCESS PRESS, 1821 University Ave. #104S, St. Paul, MN 55104 • FAX 651-644-2136 • E-mail: access@accesspress.org PROGRAM OFFICER MENTAL HEALTH PRACTITIONER PLANNER PRINCIPAL - STATE Rise Inc, a progressive nonprofit human services agency is The Jay and Rose Phillips Family Foundation HIV Prevention Community Planning Coordinator seeking a qualified Mental Health Practitioner to provide The mission of The Jay and Rose Phillips Family Foundation $43,430 - $64,108 Annually The Minnesota Department of Health (MDH) is seeking can- supportive living, transitional housing and recovery related is to honor the legacy of its founders, Jay and Rose Phillips, by didates for the position of HIV Prevention Community Plan- mental-health services in Anoka County. Our team provides continuing the family tradition of sharing resources for the ning Coordinator. This position is responsible for statewide services to people with psychiatric and often co-occurring public good, while exercising leadership and flexibility in HIV prevention community planning activities implemented chemical-health problems in self-sufficiency, housing and re- responding to emerging community needs. We currently seek through a community advisory body to the STD and HIV covery. We seek a motivated self-starter with experience in a Program Officer to conduct the Foundation’s grant-making mental health, chemical health, and familiarity with domestic efforts. Section of the MDH. violence, sexual abuse, and poverty. This is not a residential Minimum qualifications include a bachelor’s degree and two program. Qualified candidates will have a bachelor’s degree in Responsibilities include working with foundation staff to years of professional experience in the planning, implementa- human services, preferably in social work, and no less than two assess funding proposals, analyze agency financial docution and administration in the area of public health programs or years mental-health experience (or combination of experience ments, conduct site visits, prepare staff summaries and recoma related field. For a complete job description, a list of all qualifying as Mental Health Practitioner). Valid driver’s li- mendations, provide technical assistance to grant applicants, required qualifications, and online application instructions, go cense, professional writing and verbal skills required. Back- and monitor grantees’ progress towards funded projects. The to Resume Builder at www.doer.state.mn.us and reference job ground in transitional housing, rental subsidies, homelessness program officer will also work closely with community leadpublic-benefits advocacy a plus. Rise offers an excellent ers and other funders to identify local needs and promote posting # 06HEAL000510. benefit package and training policy. Starting wage $15.00- opportunities for further support and collaboration. For questions or additional job info contact Gary Novotny at $16.50 per hour. Resumes to Rebecca Fink and must be Qualified candidates will have ten years or more professional 651-201-4029, or Gary.novotny@health. state.mn.us. E-mail accompanied by a cover letter. Rise Mental Health and Housing Services work experience in the nonprofit community, with at least five communication is preferred. Applications will be accepted years of leadership or management experience, preferably in 8406 Sunset Road through February 21, 2007. The MDH is an equal opportunity/ Spring Lake Park, MN 55432 a grantmaking or contract management role. A bachelor’s affirmative action employer with a strong commitment to www.rise.org degree is required, master’s degree preferred in a related field. workforce diversity. Bfink@rise.org The ideal candidate will possess excellent interpersonal and written skills, exceptional organizational skills, demonstrated Cont. from p. 4 Equal Opportunity Employer ability to work with a broad range of individuals and groups to achieve results, assess issues from a systems perspective, and They met with the newspaper. Chuck and his colleagues went have a broad working knowledge of the local nonprofit They continued to connect with to meetings and researched. The Healthcare Employment Opportunities more people with disabilities. group figured out a creative way Regina Medical Center is a comprehensive health-care facility sector’s current and emerging trends and issues. Application to fund their housing proposal. located 20 minutes SE of the metro area. For employment deadline is February 16, 2007. No phone calls please. The idleness of the group mem- They met with foundation bu- opportunities, visit our Web site at www. reginamedical.org Send cover letter and resume to: bers turned into a resource. reaucrats. The group expanded or call our application request line at 651-480-4226. Program Officer Search Chuck had plenty of time to be their ranks of both people with The Jay and Rose Phillips Family Foundation at the legislature. The group disabilities as well as the tempoREGINA MEDICAL CENTER 10 Second Street NE - Suite 200 organized, lobbied and testi- rarily able-bodied. 1175 Nininger Road Minneapolis, MN 55413 fied. Within two years, postHastings, MN 55033 phillipsfnd@phillipsfnd.org card registration and mail-in Chuck organized a meeting AA/EOE EOE ballots had become law. People with the county official who could use rubber stamps as their controlled the residential prolegal signatures. And the state gram budget. The group pre- on his word board. “God damn, human rights code had been sented their plan of a real you!” He shouted in a voice amended to include disability. house, in a real neighborhood that we had never before heard. Metro Mobility came a couple where the residents would be Chuck found his voice. After a of years later. in charge. It would cost much year’s work, the group opened less than a nursing home alter- a house. Chuck moved in with Chuck had been active in this native. In a monotone voice, three other guys. entire campaign. He and his the official recited in sterile colleagues became regulars at detail how such a proposal was While I would like to say that the Capitol. The slick marble simply unfeasible. they all lived there happily ever floors were like a skating rink after, social change doesn’t for his crutches. He’d fall and Chuck stared at the bureaucrat happen with such tidiness. get up, angry if someone sug- with his penetrating brown After a couple of years, adgested that he use a wheel- eyes. When the official fin- ministrative problems sunk the chair. He delighted in busy ished his rejecting comments, place. Yet the self-determinalegislators having to take time Chuck mustered his coordina- tion model has lived on. Bev, R.N. to read his language board as tion into a fist. He raised his 25 years he slowly and unsteadily arm with a directness I’d never We cannot let this story die pointed to letter after letter. seen in him. He crashed his fist with Chuck. ■ YO U R P L AC E F O R A R E WA R D I N G

FRAHM -

Fairview Health Services

I am the care I give.

I am Fairview.

A couple of years later Chuck’s parents decided to retire and move to northern MN. He didn’t want to go with them and return to isolation. His only choice was to enter one of the large nursing homes where he and his friends had registered voters. The group listened as he presented his plight. He wanted to be independent and live in his own place. They vowed to organize a house that would be his home, where he could be as independent as possible. Charlie, Renee and Bill Smith, who would later found Access Press, became active in developing the project. Many people with disabilities of that day were housed in large nursing homes. Welfare and health agencies were not interested in a house that would be controlled by the residents.

Classifieds

Reach 11,000 Active, Interested Readers with Access Press Classifieds. $10 up to 12 words, 45¢/word thereafter. Must be prepaid. Mail with check to: ACCESS PRESS, 1821 University Ave W, Oak Park Village: One bed#104S, St. Paul, MN room wheelchair-accessible 55104 • 651-644-2133 apartments. Section 8 subsidized. FOR RENT Convenient St. Louis Park locaHolmes-Greenway Housing: tion. Call 952-935-9125 for one and two bedroom wheel- availability information. Equal chair-accessible apartments. Opportunity Housing. Section 8 subsidized. Convenient SE Minneapolis location. Seward Square Apartments: Call 612-378-0331 for avail- We are currently accepting ability information. Equal applications for our waiting Opportunity Housing. list for barrier-free housing, in Minneapolis, that is federally Lewis Park Apartments: subsidized. For an applicaBarrier-free housing with tion, please call 612-338-2680. wheelchair users in mind. Sec- Equal Opportunity Housing. tion 8 subsidized. One- and two-bedroom units. For more Rent an accessible 3 br. pool information on availability call home near Disney World. 651-488-9923. St. Paul, MN. About $100/night. http://www. Equal Opportunity Housing. AccessibleOrlando.com

C A R E E R I N H E A LT H C A R E

Join my team at fairview.org/divjobs. Build your career where breakthrough medical care and a progressive work environment are parts of everyday life. At Fairview, we believe the only way to deliver our promise of exceptional care to our patients is by supporting the health and well-being of our employees. Join us, and you join a close-knit network of professionals whose shared values of dignity, integrity, service and compassion guide everything we do to improve the health of our communities.

Learn more about opportunities in: • Nursing • Imaging • Lab

• Respiratory • Pharmacy • Physical Therapy

• Operations • Administration

If unable to apply online, call toll-free 1-866-871-JOBS (5627). fairview.org/divjobs TTY 612-672-7300 EEO/AA Employer

• Medical Records, and more…

February 10, 2007

Established in 1991 Nurses z Live-ins z Home Health Aides z Personal Care Assistants z Serving Adults & Children with Long Term Needs z PCA CHOICE Option z

Also a Provider for: UCare & Axis

IN HOME

PERSONAL CARE

763-546-1000

THE FRIENDS OF ACCESS PRESS Thanks to the following sponsors for supporting Access Press this year. ----------------------------------------- SPONSOR ---------------------------------------Diane Achterling Brigid Alseth Hans Anderson Steve Anderson Jeffry Bailey Dorothy Balen Robert Barr Janet Berndt Roberta Blomster Mary Bodnar Carl & Kathie Bryngelson Carlyn Bryngelson Denise Cady Daniel Casar Jon & Anne Casey Mary Collins LeAnne Dahl Mary Choiniere William F. Denny Helmuth Paul Droher Beverly Ekola David Fevold Donn L Feigal Mary Fenske Mary Frank-Wawokiyawin Betsy Frederick Robert Geldert & Roberta Pinkosh Margaret Gibson Florentine Goulet, O.S.B. James Grimm Dorothy Hass Pamela & Cullen Hamilton Marjorie Hammargren Dennis Hardy Ellie Heller Lois Hietala David Hopkins Shannon Hunter Dale Janiszeski Beth Jensen Melvin Jerry Karen Jothen Luci Kennedy Karen Kolodziejczyk Ruth Krueger Jo Lambert Barbara Larson Sister Jo Lambert Susan Lasoff Rudolph Lauermann Sean Leary Gayle Lea Richard (Bud) Lord Colleen McGovern Donna McNamara & Paul Monroe Barbara Mack Melody Martin Ardis Meyer Twyla Misselhorn Vicki Dalle Molle Patricia Moore Kathy Moran Valerie Oas Rosaasen Ordean Linda Paulson Donn Poll Paul/Peggy Revering Kim Rezek Brian Roger Annemarie Smisson Gerald Smith Pat Scott Virginia Schwartzbauer John Sherman Lisa Showers Gary & LeAnn Taylor Joseph Taylor Sara Tesch Mark Thomford Anne Velasco Katie Voss Thomas Weidner Gary Wenish Nancy Wise Katherine Zehringer The Arc of Cass County Brookdale Hennepin Library East Suburban Resources Jordan New Life Family Support Center MN Clipping Service Native American Rainbow Network Northeast Residence, Inc Ramsey County Southdale Hennepin Library ------------------------------- FRIEND SPONSOR ($35 and above) --------------------------Lisa Adami Dave & Lynda Adams Paul Althoff Hans Anderson Mary Andresen Kathy Ball Rick & Tanya Benjamin Vicki & Fred Benjamin Patrick Bilbrey Anne and Bob Brick Susan Blaylock Maynard Bostrom Anita Boucher Rogers Brian Susan Bulger Denise Cady Rick Cardenas Daniel Casar Yoshiko Dart Teresa Dock Dawn Doering Neil Doughty Barbara Droher Melvin & Georgia Duncan Jesse Ellingworth Jo Ann & Steven Erbes Lee Ann Erickson Nancy Eustis Daniel Fischer Sean and Jeanne Fogarty Betsy Frederick Carla Friese Claudia Fuglie Robert Gilbert Marge Goldberg Nadine Groven Donald Haaversen Judith Haaversen Eric Hall Craig Dunn & Candy Hart Ellie Heller Michael Hicks Anne Henry MJ Jellison Jim Jasper Cindy & Greg Johnson Karen Jothen Barb Kane Mary Kay Kennedy Corbin Sherwood Kidder Barbara Kleist Marie Wolff & Eric Kloos Anna Kook Eugene Kook Ann Kranz Richard & Patricia Krause Dawn Kreutz Linda Larson Steven Laux Douglas and Linda Leicht Lorene Leikind Donna Liveringhouse Dorothy McCoy Thomas McCoy Connie & John Marty Lynne Megan Robert & Ardis Meyer Sara & Gary Meyer Kristi Michaelson Jackie Mlynarczyk Jeff Molnar Kathy Moran Liz Morque David & Judona Musselman Joe & Maureen Musselman Lee Ohnesonge Clif Ollila Mark Olson William & Joen Overby Mark & Mary Payette Julee Peterson Vail Place Linda Paulson Richard Peterson Debra Piekarski Margery Pilhofer Robert J. Geldert & Roberta Pinkosh Julee Quarve-Peterson Loren Rahn Kelly Rathcke Susan Reyes Brian Rogers Ann Roscoe

------------------------------ FRIEND SPONSOR Continued ($35 and above) -----------------------Patricia Rydeen Arthur Sauter Suzanne Severson Jon Skaalen Diane Sprague John Stewart Cathleen Urbain Teresa Vickery William & Sara Trautz Candace Warne C. L. Wiehle James Wilkinson David Wood Access to Employment All Home Caring Arc Southeastern Minnesota Axis Healthcare Blue Sky Designs Inc Concordia University–Project Exceptional Equity Services of St. Paul Freedom of Speech, Inc. Kaposia, Inc. MBW Company MRC MRCI - Worksource Midwest Special Services MN Diversified Industries. Inc National Multiple Sclerosis Society Resource, Inc. Rise Services Thrivent Financial for Lutherans United Cerebral Palsy of MN, Inc. ---------------------------------- BRONZE SPONSOR ($75 and above) ---------------------Sue Abderholden Stephen Alarik Jeff Bangsberg Scott Bjerkesett Sandi Lane & Monte Blair J.A. & Mary Blanchard Wendy Brower Steven Burrill Scott Cady Cathy & Bill Carlson Paul and Mary Choiniere Chernah Coblentz Donn Feigal David & Candace Gislason M. Therese Gockenberg Luther Granquist & Anita Schermer David & Cindy Hadlich Kathleen Hagen Craig Dunn & Candace Hart Roger A. Hoffman Skip & Ellen Houghton Jim Jasper Carol & David Larson Gregory Larson Linda Leicht Richard J & Kelly J Matter Chris Meyer Paul Mueller William O’Dowd & George Zilligen Mark Sherman Patricia Siebert Barb Smith Jan & Don Snook Eric & Caroline Stevens Quinn Tierney Peter Vaill Joani Werner Brain Injury Assn of MN The College of St. Catherine Community Involvement Prog. Dept. of Occupat’l Therapy-U of M Equity Services of St. Paul Freedom Health Care, Inc. Lifeworks Services Marketing by Design Merrick, Inc. New Dimension Health Opportunity Partners MN Diversified Industries TSE, Inc. --------------------------------- SILVER SPONSOR ($150 and above) ----------------------Dr. Yuonne Rb Banks Jaime Becker Scott Beers Michael Bjerkesett Lou Burdick Robert Buuck Mike & Jan Chevrette Robert Gregory Doris & John Groven Ron Holstrom Dianna KrogstadRonna Linroth Michelle Malinoff Karen Moore Jim & Cindy Musselman Donna McNamara Chris Meyer John & Shelia Meyer Manley and Ann Olson Patricia Rogers, Ph.D. Erica Stern Kevin & Kathy Sullivan Kathy & Paul West Julie Wegscheid & William Lipkin Arc Hennepin-Carver Freedom Health Care Housing Link MNDACA MN Independent Living Services MN Rehab Association MN Work Incentive Connection National Alliance for the Mentally Ill of MN Northwestern College PACER - Paula Goldberg Rehabilitation Services Ryan Companies Inc. Tamarack Habilitation Technologies ServeMinnesota! SW Center for Independent Living (SWCIL) UCare Minnesota TSE, Inc. ------------------------------- GOLD SPONSOR ($350 and above) ------------------------------Lou Burdick Shirley Larson Margaret Perryman Lottsa Tax & Accounting Services SWCIL --------------------------- DIAMOND SPONSOR ($500 and above) --------------------------Mary Lou & Allan Burdick J Martin Carlson Duff-Westman Family Fund of The Minneapolis Foundation Wilber Frink Lynda Milne In Home Personal Care Rapit Print Northeast Residence, Inc ------------------------- BENEFACTOR SPONSOR ($1000 and above) --------------------Bremer Foundation Catharine C. Reid Friends of Headwaters Foundation for Justice Headwaters Fund The Medtronic Foundation Thomas & Lassiter Family Fund of The Minneapolis Foundation

---------------------------- IN KIND (time & services for this issue)-------------------------Mel Duncan • Kate Edenborg • Sherry Gray • Kathrine Guernsey • Jodie Johns Catherine Komp • Dawn Langton • Lolly Lijewski • Dave Reynolds • Sharon Rolenc Lisa Schmidtke • Disability Linkage Line • Gillette

I would like to…

Subscribe & Support Access Press

Subscriber $25 Friend $50+ Silver $150+ Gold $500+ Benefactor $1000+

Date:_______________ Amt. Enclosed $____________ Name___________________________________________ *SUBSCRIBE Address_______________________________________________________________________________________ Phone______________________________________

In addition to receiving your one-year subscription, all support over $25 per year is taxdeductible. Reduced subscription rates available upon request for individuals with fixed incomes.

FOR $25

e-mail____________________________________________

Thank You! Your support is critical for Access Press to continue being the voice for people with disabilities. Please mail your sponsorship/subscription to: Access Press, 1821 University Ave. W, Suite 104-S, St. Paul, MN 55104. Thank you.

*Receive 12 issues per yr in the mail